Sunday, 30 December 2012
Thursday, 6 December 2012
If I ever imagined id not b able to #SelfSupport I wouldnt of had my wonderful children as id want a different life for them than my own raised in the last recession.
You see when I had my children I was working fulltime & continued part time for the 1st year of their lives b4 going fulltime again.
I was living with & plannin on marrying their dad until i found out he was having an affair so I left.
I became a single mom on benefits with 2 children aged 1 & 2. I got no financial support from their dad at all.
3 years later I meet my now husband. We where both working and had just moved into our own house (council not private).
We decided to have a baby together and I worked right up until the birth. Although I had to go part time in my 2nd trimester due to how poorly id started to feel.
Our son was born on 3rd January 2001 8 weeks early by emergency csection leaving me traumatised and as we would soon learn disabled.
Now unable to work even part time hours due to the crippling & progressive nature of my disabilities I find myself with a majority being called scrounging scum.
Scum that David Cameron & his cronies feel are lowering Britains standards. Scum that should be humiliated & villified for claiming the hard earned tax of those that work & contribute to society.
It wasnt my fault my 1st partner couldnt keep it in his pants. Its not my fault my son was born prematurley leading to the surgery that would disable me.
I am a qualified professional, I didnt spend 4yrs training & working my asse off to sit at home sponging off the nation.
Its not my husbands fault that he has a disabled wife which means he has become my fulltime carer (he is a qualified cabinet maker).
Yet here I am claiming benefits for me the hubby and 3 children & living in a council house. Not the future id had planned out in my head for sure.
I and many, many others are in the same situation yet have done nothing wrong. We are cruelly ripped to bits by government and mislabelled as work shy scroungers when in fact that is far from the truth.
Am I ashamed im on benefits? No im not because iv done nothing wrong. All my children where born into 2 parent, fulltime working homes. Iv never been workshy.
When I first became single I missed work awfully I found I was bored which eventually caused depression. I HATED not having enough money to buy what I wanted when I wanted it.
As soon as I was settled into a new relationship the first thing I did was go back to work. I loved the independence the money the freedom of buying nice things without wondering what id have to go without.
With my now hubby we where both working, and had settled into a new home. We had security so chose to have a baby. I planned on doing what id done with my youngest two again. Work part time till they turned 1.
But as iv explained the birth of this baby that we could afford to have led to the disabling disability that has caused my life to grind to a halt.
So ashamed no im not, sad yes because I had plans dreams goals ideas for my life and what I wanted from it.
Yet because life and its shit happened to me all beyond my control I am one of the most hated class in society!
Friday, 16 November 2012
Wow erm kinda feeling numb cus since my mental cognition has returned I have felt something missing and iv felt it before but couldn't name it. I know I was in denial, I don't want to accept what it was I was feeling.
My husband does everything and I mean everything, he looks after the housekeeping, cooking, washing, the kids & me and he is brilliant at it. I don't want for anything because he does it all for me.
So what's my problem what is it that is burning a hole through my chest ? Sadly iv realised we are no longer emotionally connected he is JUST my carer and we are married.
He cares for me has done for 11 yrs and iv realised that slowly and quietly over the years as my disabilities took more and more of me away, they slowly stole my Husband and gave me the best carer in the world.
He is awesome, but we are missing our emotional connection, its gone ad iv tried to talk to him but he gets defensive and shuts down.
I need my husband back and dont know what to do I'm just numb from the realisation that my disabilities stole my husband and gave me a gold medal winning carer.
I know he loves me but don't think he is In love with me, he cares for me like I'm a queen but for me that's not enough I need someone that can be there for me emotionally because my disabilities take alot out of me.
I want a hug when sat sobbing in pain saying rather be dead than go through aymore. I need conversation about feelings, good or bad, happy or sad, I need to feel connected..
When I asked him why he didn't try to comfort me he replied 'you cry a lot lately" his answer broke my heart because to me that answer basically said "Is There Any Point ?" 4years ago he would of held me in his arms, stroked my hair and told me I'd be ok not ignored me but it seems the more sick I got the less empathic and loving he got.
I have suggested mediation, anything to re connect and he won't - I dont know what else I can do ? I feel like he doesn't want to re connect because he says nothing is wrong.
I can't live like that - I'm so confused because I do love him but love isn't enough to carry a relationship !?!
For all the things my disabilities stole I never ever imagined it could take something so special to me, so needed ! Yet it has, I say this with a deep darkness in my heart, if my husband chooses to be just my carer then we will eventually cease to be married.
I NEED to be emotionally connected, its an essential requirement in a relationship for ME . . .
I need him to see me as his wife not just a disabled women . . .
Friday, 2 November 2012
Fibromyalgia & Dercums Disease have taken so much I often wonder what I have left.
They have taken my dreams, hopes and aspirations chewed them up and spat them back out into a muddled heap.
I wanted to buy a little house in the countryside, set up my own little private counselling practice. I wanted to look forwards to my childrens children visiting me. i wanted to enjoy my old age, grow old with my husband and have our lives once the children had flown the nest.
Invisible Disability took from me everything I took for granted, walking endless miles, camera in hand, preperation and cooking of food. Wearing whatever I wanted, when I wanted. It made sure I can no longer sit on a soft sofa for more than a few hours, that I'd never sit at the kitchen table with my family.
It took my ability to reproduce in every sense of the word, as at age 36 I had to have a full hysterectomy. To be fair I didn't want more children but having that surgery so young has its own bag of balls to throw at a person.
It has taken from me being able to grocery shop, remember things, retain new information in a way I always understand. I can no longer hold long conersations as unless they are in writing I will forget what I was talking about, so its taken my ability to be self sufficient and self caring.
Its stolen the fun things I used to do with my children, no shopping trips, trips to the cinema, parks, camping, No more watching my boys at football practice, no cheering them on at matches. Its taken away my ability to leave the house.
It took from me my ability to sleep, my ability to wake up. It took things I hadn't realised I took for granted, my bodies ability to regulate its own temperature, to deal with aything cold.. It took my appetite and with that it took my ability to be able to eat whatever I wanted.
Its taken dancing from me and finally exercise to, it has at times taken my mental health, my pride, self respect and esteem. I feel like I can feel them shortening my life, I can only imagine that this life, my nothingness will be a long drawn out painful death, because this is not living, not for me.
Invisible Disability has taken away my ability to ever feel well, imagine living your life as if you had flu, 24 hours a day, 7 days a week, 365 days a year ! and that is only half the battle.
It has taken everything I took for granted and then some, to which point I no longer recognise the life that I have, I look like me, I sound like me but I am not the me that I once was, a working, houseproud, independent, married, mom to 3 wonderful kids.
My children have lost their mom a mom that used to do things with them. My husband has lost a wife and become a carer, which also meant his career as a cabinet maker was lost to.
I am a shell because all iv been left with are a sense of humour and defiance to try and be all I can be with what I have left.
Even then my invisible disabilities try to get that from me, at times they win, but never for long as the harder they try the more defiant I am, no way are they taking my sense of humour either as that is all I have left of the me that I recognise.
I fear future struggles, I fear what my future holds for me, what impact my disabilities are going to have on my husband, my chidlren and myself and my ability to bounce back, because in all honesty I'm scared of what will happen when my invisible dsabilities take that away from me to.
There are times I sit wth tears rolling down my cheeks saying "I don't want to live like this, I am exhausted beyond caring, I want to die because I can't imagine spending anymore time like THIS. I don't want to suffer anymore I wan't to fall asleep and never wake up"
Do not confuse what I have said with me being suicidal I am not ! Invisible disabilities have taken a lot from me, they however cannot take away how other people feel about me. I am loved and cherished and its because of these people I find a way to carry on.
Friday, 26 October 2012
Total head frak "sorry its not a fare its your new normal" wow not quiet sure how I am gona digest this info, because getting back to my normal is what has kept me going.
So this new normal involves not being able to walk more than a couple of feet without it becoming so uncomfortable I have to stop and sit. A normal that now means I spend between 18 and 20hrs laid on a bed as sitting means, lower back pain, sore scapula regions, restless leg syndrom, painful hips n knees blah blah..
I have noticed a sensitivity to material that is extreme compared to what I am used to. Clothes that where comfortable now cause my skin to itch, seams that hadn't bothered me have become the bain of my life.
Anything on my arms is a no go unless it's very loose, I can't wear anything on my feet for more than a couple of hours sandals, socks even slippers drive my feet nuts.
Have to admit I did LOVE the look that spread over my doctor's face when he gets my depression score out to discuss, its now my 6th year in a row that other than feeling a bit blargh over 'normal things that the general population feel blargh about' I do not have depression !
So no depression and still in mega amounts o pain, puts paid to past dx I have had that its my depression causing my pain, that the pain all stems from my negative thought process *pokes tongue out and blows a fart* !
I was depressed when I first got sick because no one knew what was wrong with me. Being told it was "all in my had' and "I was the sole cause of my own pain" only intrenched the depression further.
Also the fact that my doctor when I got my dx of Fibro treated me for depression and pain not just one or the other (iv noticed to many doctors only treat for depression yet give no pain relief then wonder why the depression lasts for so long) !
Since my Fibromyalgia dx 8yrs ago (had it for 11yrs) a new set of doctors, some understanding, self education and the desire to live as best I can, I have come out of the depression. Don't get me wrong if I have been in a severe flare for along tme I do feel blue, a bit down, emotional, but its 'normal' . What hasn't happened is a slide back into oblivion
My first concern for myself when doc told me this my new normal was 'shit I don't wana go into a severe depression' cus I have dipped into 'down' but not dpressive episodes - the thought of a depressive episode frightens me.
I don't know what my future holds for me all I know in the now is I have just found out there is a new me that yet again I am going to have to get used to, learn my now capabilities, my new boundaries, not dwell on what I can no longer do. Its time to adapt and change again.
Getting the dx of Dercums Disease running alongside my Fibromyalgia and me having a few months to get my head round it has helped a bit because I understood what the word 'progressive' meant, also that in the last 3yrs my health has declined (slowly) so much was explained by the new dx. Which has led to better pain management from doc.
The "this is your new normal' has put me on my asse with a bang. But it is my truth now and one I will try to deal wth in the same way I have tackled having fibro, with defiance.
My head did do the 'I'd be better off dead, I don't want to live like this' but just for briefest time as although I may at times feel useless (inc having to quit one day I work as I wasn't coping with the stress) I realised that just being there emotionally for my friends, husband, cihildren wasn't a thankless job.
I know the stuff I post on Twitter helps people, my kid sis (little cousin) reminds me often that she couldn't imagine not having me in her life, the bonds I share with my children are something I am most proud of (even if we do clash and some more than others).
So I do have a place in this world I am able to emotionally support people without judgement or advice, by allowing them to be autonomous - so while my body may have hit the end of the road my mind hasn't.
Until my brain/mind does go I shall live knowing I d have a roll to play, a place in people's lives. Hopefully when the mind goes it will do so to the point I won't remember nor care.
Thursday, 25 October 2012
That's all for now~
Find me here
Rest in peace Janet E. Hanrahan July 3, 1938 - October 15, 2012
Wednesday, 24 October 2012
People who talk to me regularly will be aware that things at my job havn't been going so well, I have not felt supported from the first day I started. Not to go into details but to explain the impact on myself and how the realisation hit me that it was going to work that was making me really poorly and had been doing for a few months.
I used to love my Monday's, always chirpie and smiling, that bright optimism I have for life shining through. I'm rather quiet a work and even a little reserved. I like to keep myself to myself but none the less people always cmmented on my smile and how down to earth and pleasant I am.
Over time more and mre little things where happening and each tme I felt less n less looked after by the people I worked for. A pattern began to emerge I'd start to feel ill on a Sunday evening, mild costochondritis, niggling aches and pains n a general feeling of being down.
On the way to work I'd be sweating, have the chills, be falling asleep in the car. Get a headache and have general all over body pain - once with my clients most feelings subsided, although as soon as I had to deal with the people I work for I'd soon end up feeling icky again.
Then I started to be really poorly on a Tuesday to the point I couldn't get off the bed due to severe pain in my back, legs, knees, akles and feet. The headaches where getting more often (almost daily) still I didn't put 2 n 2 together.
That is until something happened which for me was the last straw, I rang my supervisor to talk through things and try to sort out what was ging on in my head - during the course of the supervision session I became aware that it was the stress of being in a job that I didn't feel safe in that was causing my fibro and dercums to pull rank - it cmes back to what iv said in a previous blog (emotions ad physical pain).
Such ahuge realisation for me, my job was what was making me ill, as I worked Thursday's also but did not feel ill on a Wednesday, Thursday or Friday - although I work for the same company on a Thursday its an outreach group, so there is no contact with anyone from the main office.
So now I understood what was wrong, but what could I do about it ? kinda think the universe was looking out for me now as yet again another cock up happened and this tme I wasn't going to take it lying down. I was told a meeting would be held at work between myself and my line manager, also the boss who runs the whole operation.
Twice the meeting was cancelled but instead of getting anoyed I used that time to put together my own paperwork about the things I felt shouldn't of appened. I knew they thought it was just going to be a conversation about the last incident haha no chance I'd been let down so many times never been given answers or apologies to why and how these things had happened, that I was going to make sure I got heard once and for all.
And so the day approached I been getting headaches for a few days leading up to the meeting, the meeting happened its contents is not of importance other than to say I was heard and I quit Mondays. Things ended amicably with all of us leaving with stuff to think about.
The relief I felt was immense although I was exhausted so got my had down for a few hours, unfortunately I woke feeling worse than I had initially felt. By Monday evening my head had begun to split. I clambered into bed took migraine meds and fell asleep till I woke for a wee n realised my head had now gone boom and I had a full blown migraine.
I'v slept most of today away, le hubby waking me at med times so that I didn't go into withdrawl also to make sure I didn't dehydrate. So yet again lack of understanding left met feeling stressed out, usupported and emotionally strung out (at work) so I did what I felt was right for me I QUIT because I am ill enough without the actions and words of others causing m stress and me feeling more ill.
I'd like to know how the ESA are going to find me and the many other severly effected fibro, me, cfs patients etc work ? I am a counsellor my job is t sit in a big comfy chair for an hour helping people to understand themselves a job I trained for when I first got sick as it involves me sitting, not moving - a job I felt capable of doing and one I am good at, what I hadn't bargained on was not being understood by the people that employed me.
So even doing a job I am good at still made me ill because of the peope I worked with - I can only imagine what the DWP have got planned for me and all the other people suffering. As I was ill for 3days because of the stress I felt and although I was only working 2 days a week the stress at times made me feel so ill I didn't even make it to work.
Yet apparently Ill be well enough to make a return to fll time work in Feb 2013 in an office as a secretary ? Go figure because that job is way more stressful than the one I just quit. I can't use a keyboard, hold a phone for more than 10mins without getting severe cramp my hands. I can't write more than 5 sentences for the same reason. I wll be expected t be up and down on my feet all day, filing, writing, typing and taking calls.
I can say with all honesty that if the DWP do this to me they will put me in an early grave and I wll probably do so through choice as I cannot imagine living every day feeling like crap, being in intense amounts of pain - for starters I will be most unreliable and would probably get the sack before a month is over.
Then the DWP will withhold my benefits for getting the sack and say I did it on purpose !
For those of you that are religious "God help us all"
For those of us that are not "May the universe watch over us"
All the best till next time Georgie xx
Sunday, 21 October 2012
Todays blog is about the receptionist yet again deciding whether my need to see a doctor is urgent and then questioning me about my meds, leaving my doc with one option to put a red note on my notes for the receptionist to read as when I call the doctors, the receptionists pulls up my details - the red note will be on the first screen they see when they pull my notes up !
I'm going to start by saying I understand that receptionists have a job to do, but I draw the line at further questioning by them over my medication and yet again deciding whether I am an emergency ! Bad enough that they decide if I'm an emergency because they are not medically qualified to do that, nevermind questioning my medication ! !!
Since my trip to hospital the pain iv been in has been in the extreme category, my doc gave me Oramorph 10ml every 4hrs and told me to keep a pain diary. She instructed me to phone on Friday to see her.
Although as sometimes happens emergencys pop up and one did - I sall explain - on Wednesday my daughter who has been poorly for a while was having a kidney scan at the hospital so we'd been awake since 8am getting ready.
For reasons I don't need to go into my eldest son (17) and I had a huge argument while I was getting ready, leading to him throwing himself down onto his bed causing the huge mirror above his bed to fall on top of him.
His knuckle bleeding, I sent him to the local NHS Walk In Centre and left to take Paige for scan. An hour after getting home from the hospital I get a phonecall from youngest childs school "Ethan has fallen over and has had a rather nasty bump to his head can we please collect him (we did).
Next is a message from Jack he has been sent to Southport Hospital as what looked like 'a small cut' was turning out to be a whole lot more serious. When the nurse examined his fnger a piece of cartlidge was 'just there hanging' so she removed it, there was also damage to the tendon and glass deep in the wound.
Soooooooo my pain that the Oramorph hadn't been dealing to well with, was off the wall, my spine felt like it was on fire spreading out into both scapula regions, into my shoulders, collar bone and both pectoral muscles - I describe this kind of pain as acid running through my bones and leaking into my muscles, a deep burning, radiating pain that STAYS no matter what I do or take.
Even though I felt calm my body was responding to everything going on, I sat clutching my chest with silent tears rolling down my cheeks (the pain was making me cry not what had happened). I wrote in my pain diary I would be calling my doc first thing Friday to arrange an appointment and take the pain dary she had asked me to keep, due to lack of relief on Oramorph.
I went to work on Thursday, the woman I work with helped with set up of room etc as physically there was no way I could help her. My phone is always turned off when I am working - I switched it on as soon as I'd left work and got a text from Jack "mom the hospital have rang, you need to have me at Whiston Hospital Plastic Surgery Unit for 7am tomorrow".
It clicked with me instantly I won't be able to see the doctor, shit what am I gona do so I rang there and then ! This is what hppened.
Me - hi I need an urgent call back with doc please.
R - what for ?
Me - I need more morphine or run out over the weekend, my son has to be at Whiston for emergency plastic surgery on his hand for 7am tomorrow.
R - prescription requests take 48hrs, you can't just expect to phone a hour before we close and speak to doctor.
Me - iv jst explained its an emergency, I was meant to b calling tomorrow anyway as doctor wants to see me, but I wll be at Whiston Hospital. If I don't get more morphine I will run out of it.
R - you only had x amount on x dates
Me - not that its any of your business but doc gave me 3 bottles which equals 6 days so if I don't get anymore I am going to run out, I wouldn't of rang if not an urgent situation.
R - Ill book you in for call back tomorrow.
Me - I have just told you I cannot see her tomorrow I have to be at Whistom at 7am.
R - so what time do you have to leave (a totally stupid question as surgery only opens at 08.30 and I had already said I needed to be at Whiston FOR 07.00)
Me - 06.15
R - iv booked you in for between 10-11 am tomorrow for a call back.
Me - I wll b at Whiston hospital the doc wants to see my pain diary so she can work out my new morphine dose.
R - she can send the prescriptiom to a pharmacy near Whiston.
Me - your obviously not hearing m she wants to SEE my pain diary
R - like I said you can't call an hour before surgery ends and expect to see a doctor, Your surgery contact IS booked for tomorrow morning !.
Me - (in my most sarcastic tone) thank you for ALL your help, I really appreciate that you have managed to offer me an appointment. I greatly appreciate that you listened to me !!!
At which point she mumbled something and then put the phone down.
And so we arise at 0515 leave at 06.15 and Jack is at Whiston hospital on time. At 08.30 I receive a text from the surgery my telephone contact is at 10.25am.
My doc rang on time, I explained the whole situation to her - she asked questions about my pain diary, how much relief was I getting from the Oramorph etc etc. I told the truth hoping she would believe me about how bad things had been.
At the end of the call she decided I was to go on slow release morphine tablets and only to use Oramorph for breakthrough pain. I can't describe the relief I felt that she believed me without seeing the diary. I feel so lucky to have such an awesome doctor.
She could of refused to change or up dosage because the agreement had been I saw her in person with the diary to explain. it was a mssive relief to be believed.
I apologised for not being able to see her, her answer "being with your son while he has emergency surgery is understandable, accidents happen. You should of called as soon as you knew about his surgery"
Me - I found out at 16.30 yesterday and rang immediately (then explained what had hppened) !
What my doc said next surprised me " I am going to put a RED note on your notes saying if you phone and say its an emergency then you MUST be called back the same day as you rarely if ever call saying you need same day treatment"
What does that say to you, because I know what it said to me !?!
Friday, 12 October 2012
The last few months have been petty rough fibro wise for me. Fatigue, pain, isomnia, pain somnia, headaches, migraines, weight gain, muscle spasms. I think I have been through the full gammet of everything fibro has to offer.
This led to a trip to accident & emergency last night due to the nerves in my tail bone feeling like they had been directly wired to the national grid. Pain shooting, burning, clawing its way in both directions above my asse cheeks, in both hips & through my right side groin, into my thigh bone & abruptly ending at the tender spot on the inside of my knee.
After taking every form of pain relief I had & a tiny bit more I knew this would not be easy to tame. Unable to lay flat on my back as this is excrutiating yet at the same time having to raise my right leg, comfort felt like it wouldn't be mine no matter what I did.
The ambulance crew collected me from home adminstering gas & air as they could see just how much pain I was in, even though I'd taken so much medication already.
On arrival a A&E I was quickly assessed & given Oramorph, now combined with the gas & air also my meds I got some relief, but not so much that I could walk or even stand for that mtter. But enough that if I sat at the edge of the bed leaning forwards & a pillow between my legs to lean on I was comfortable.
The doctor at A&E made it perfectly clear she wanted me to go home (by saying "ud be better off at home & more cmfortable as we don't have ANY free beds") & at this point I thought ok maybe I'l be able to do this, as the pain seemed to be manageable. I instructed my daughter who'd come in the ambulance with me to phone her dad & let him know he could cllect us.
The drive at that time would be about half an hour for him, 10mins later the pain came back with a bang again I was given Oramorph, my husband arrived just as I was given the dose. I checked out with the doctor was she sure I should go home as the Oramorph had only lasted 2hrs - she re-enforced No Beds where available, also that there was nothing else they could do for me.
I asked could I take the gas & air with me & was told no ! Within 5mins of getting in the car I realised the Oramorph had only been as sucessful as I'd assumed because it had been combined with a constant inhalation of gas & air which I no longer had (the doctor had assured me I could phone my own doctor 1st thing in the morning & arrange some decent pain relief maybe even the morphine patch) .
The pain now amplified I clung to hope of my doctor giving me meds early this morning. I got home & tried to lay on my bed but the pain was just to much to bear. Knowing my husband had to be up early to get our youngest ready for school I came downstairs to try and get comfortable.
With 3 cushions behind my back & further 3 under my knee's I managed 90mins fractured sleep (fractured because the smallest movement caused pain, waking me) I awoke finally at 7am no longer able to ignore the pain as where I'd stayed so still for so long my whole body was aching, throbbing, hurting & stiff.
I wanted to cry as I knew my dctors only opened at 08.30 - I watched the minutes & seconds crawl by until 08.25 when I dcided I'd try to phone, I wanted to be one of the frst with an appointment for a call back.
On the first ring I got the "sorry the surgery is now closed blah blah blah" I hung up & hit redial, this time hearing that I was through to the surgery & I was number 2 in the que. I explained to the receptionist about what had hppened & was told doctor will call you back in the next hour".
I waited & waited then waited some more, now sweating & feeling hot as my body fought with the pain & utterly exhausted due to only having 3hrs sleep in 48hrs I rang the surgery to find out why doctor hadn't called & this is what I was told "there are another 5people in front of you yet" !
Not even thinking to question it I accepted her answer & was still waiting it was now 12noon. Anger & despair have registered with me though, why was I bumped down the list of priority & by who ?
I'm unable to move, sat like astatue in fucking agony waiting to be phoned and there is NOTHING I can do about it - sweat pouring off me, stiff, sore in tears & thinking is this really a way of being, surely its not so hard to swallow abunch of pills & just be done with life ?
The thing is though if I DID they would view me as an emergency - but would never accept that I only reached that point because someone decided I wasn't a priority at 08.25 when I was only 2nd in the que.
So who made that descision that my case wasn't important enough & bumped me down the list cus to be fair I want to smash their face in.
Its no wonder so many chronic pain patients suffer with depression, feel suicidal, or commit suicide, yet another case of a fibro patient being pushed to the back of the que, mistreated, under treated & left to suffer !
I found out when the doctor did call that she hadn't been told that I was needing pain relief, sobbing I explained everything to her. She immediately agreed to giving me Oramorph & said my husband could go for a prescription for me.
So I'd gotten an answer the receptionist had decided my case wasn't an emergency. I am left with one question then "what qualifications does she have to mke that descision ?" !
Thursday, 11 October 2012
Originally posted May 25th 2011
So, I finally get to my Pain Management Clinic appointment today, that I have waited 12 months for.
I wasn’t expecting miracles, but maybe a few alternative suggestions, a change in my meds, that kind of thing. So I walk in the room and the Doc introduces himself and another doctor (female) to me. She NEVER spoke the entire time.
He starts by asking me what pain I have and wear. So I tell him. I give him my 4 page print out of symptoms and pain diary I’ve been keeping and he pushes it to 1 side with barely a glance.
Then he asks me how long I’ve had these pains…..it’s in the notes but he won’t read them….so I tell him, about 10 yrs progressively getting worse, last 4-5 yrs have gotten much worse and now 2011 severe to the point of unbearable.
He sits scrawling illegible notes and never once looks at me. Then he says, and what meds are you on? So I throw my med sheet at him (thanks go to Fibroduck at this point for her very helpful hospital forms).
He writes them all in his notes, asking me if I’m sure my thyroxine dose is right. ”Yes” I say Just been checked. Then he starts on about do I take my tramadol and paracetamol every day and do I take 2×4 a day. “YES” I say. Cos that’s what it says on my Med Chart. Then he starts wittering on at me about how the meds I’m on are an ideal treatment regime for fibro. What with the duloxetine, amitryptaline and tramadol. SO I say, BUT they aren’t working. I’m still in pain I’m NOT sleeping and my depression has increased. His answer? ..NOTHING, he didn’t answer me, he didn’t even look at me.
So then he says, do you see a specialist for your depression.? “NO” says me. Cos I haven’t seen anyone about it in yrs. The duloxetine was working well until this January. So brains of britain says….wait for it….your gonna love this one….
“We can’t help you here. Your pain is too wide spread for us to offer you any treatment. We will recommend that your GP refer you to ANOTHER clinic for holistic therapy. ”We will also recommend to your GP that you see a PSYCHIATRIST”.
At this point I kinda lost it. “The pain is not in my head. I had depression at 19 yrs old and fibro dx at 34 and yet you still want to blame the depression for my pain. Don’t you think it might just be the other way around ? Isn’t it more likely that my depression is increasing because my pain is increasing?” He refused to look at me or answer me and continued scribbling in his notes.
“So this was a complete waste of everyones time then wasn’t it” I say.
“What were you expecting from us?” he asks me.
“Oh I don’t know, some advice, a med review, some alternative treatment options” Says me, grasping at straws and fighting back tears.
“There are no other treatments for fibro” he says.
So I ask him, “What about Neurontin, gabapentin and whatever other names/similar drugs they might have?” (getting flustered and forgetting all the names) His answer….he looked me square in the face and said. “They are not proven treatments for fibro”.
I’m out of the seat at this point (a very uncomfortable seat I might add considering this was a pain clinic) and heading for the door before I hit him.
“So basically what you telling me is you won’t help me, you don’t believe in trying any alternative medications, despite many thousands of people being treated with them and you are yet another specialist who is discharging me”….and I left before he could answer.
SO, here I am blogging about one of my worst days since being diagnosed with fibro and I feel even more confused now than I did before I went to the sodding clinic. At least before I went I had hope. Hope that they might offer me a chance at an alternative med or a few sessions with a pain manager or whatever they are called. But NO nothing, just another dismissal, another discharge, another rejection.
Next stop ? June 10th back at the GPs for a double appointment. I am going armed, once again, with my pain diary and symptom sheet, and this time I want the doc to READ it in front of me, and at least discuss the possibility of trying another med, a different dose of the ones I’m on, or failing all else….A Gun!!
~*~With love and gentle hugs to all my readers. ~*~
Since writing this I have attended appointments with yet another so called Pain Management Specialist, who also turned out to be about as useful as a pocket in the back of a vest !!
I have, however, now found myself a WONDERFUL GP. She cares, she listens, she has no airs and graces and she understands me. She accepts it when I tell her a med is or isnt working for me in a certain way and she writes it on my notes. She is willing to try alternatives, within safe limits for me. She doesnt argue with me if I request a referral, or blood tests or x-rays, she NEVER makes me feel like I'm wasting her time, she never blames my weight and she always tries to find a reason for new symptoms BEFORE she connects them to my Fibro. There is only 1 downside to this GP, she is SO GOOD its hard to get an appointment to see her and she is always running an hour late. But, to be treated like a human being, its worth the wait !!
Wednesday, 10 October 2012
Find me here
Find me here
P.S. Sorry that this is mostly unrelated to fibro Georgie~
Tuesday, 9 October 2012
Lost to the oblivion that was pain.
I couldnt even lift my head off the bed, limbs like slabs of dead meat useless & hanging.
Hips that felt disconnected & loose making walking impossible. Bone pain in my legs, deep, throbbing, alive.
A lava lake burning under my skin, itching, spiking, blistering pain. Skin so raked over by allodyna that anything not 100% cotton with all labels cut from could not be worn.
A slow sinking feeling of isolation because nobody could touch me without my skin reacting as though on fire.
My hands had become screwed up balls of pain, finger hooking over finger. These claws id been left with could do nothing for themselves.
Memory failing more as each week rolled by, no retention of new information & struggling with fuzzy memories of the past. I felt my mind was lost at sea.
Feet so full of broken glass when stood on, knees beaten with a hammer, face kicked by a horse, hands stood on by an elephant, head knocked about by a nail gun, memory trickling away like a nosebleed. Body hit by a bus then reversed on. Skin dipped in acid then set on fire.
Muscles set in semi state of levidity with the little electrical spikes causing spasms MASSIVE spasms sometimes.
Exhaustion just from being awake !?! Breastbone & shoulder blades splitting apart with every breath I took.
Why am I so damn ill ? Is it worse because im laid down so much & the body doth protest. Is it a 2yr long flare ? Is it my new normal ?
My brain fogged over I found thinking & concentrating hard to do. I felt I was losing myself, I cried daily my head lost to a past where anything Id wanted to do was possible.
Eventually I went to see my Gp who said he agreed it was depression & I was given 20mg fluoxetine. The edge taken from the anxiety id felt was noticable.
Now able to think more clearly I went to the Gp again & requested lidocaine for my pain, I knew the morphine was causing its own adverse reactions.
It took a year before I got the lidocaine & it wasnt an easy ride. Knowing id feel better if I was dead yet compelling myself to see daily positives was the biggest battle.
My background as a psychotherapist bringing its own shit storm with it, denial, anger, resentment. Where was the acceptance, self care, preservation & love.
I totally withdrew from the world around me. My marriage had gone past breaking point, we had split for good. This caused me to have a breakdown.
Unable to control the hurt & greif any longer I slid to the floor sobbing & unable nor willing to move stayed there. My daughter found me, seeing how frightened she was, I reached out for help to my aunty & parents.
My aunt got me off the floor onto the settee, wrapped me in a blanket & hugged me till my parents arrived.
I wasnt ready to talk, words felt totally inadequate for how I was feeling. So I said nothing & went with my parents to theirs for a week.
Slowly I opened up to my mom, it helps she isnt judgemental. I talked through everything. I also made the descision to talk to my Gp again.
Now on 40mg of fluoxetine & alot less stress because id finally talked, id lessoned the burden & rescued myself as much as I was able.
My head balancing out I made choices, some hard, some easy but all with one goal. To be as happy & active as I can be in this life. This is my new normal, this is me.
Constant pain messes with the head, doctors need to seriously get to grips with pain releif for chronic pain patients. Its no good just offering talking therapies to a person whose illness has taken the next step. Its not their minds causing the problems.
Add mental exhaustion to insomnia, pain somnia, drug reactions, fatigue & constant pain you have a remedy harsh enough to bring people to the brink.
That was me on the brink, not willing to take my own life yet wishing death would call for me. I wanted the reaper to be my new best friend.
As my mind opened up & talking was now easier my husband & I made choices about our marriage & what we wanted, expected from eachother. The truth was for how far we had come apart, we trufly wanted to be together.
We had stopped communicating. My hubby unable to deal with what my illnesses did to me had no idea he had withdrawn from me. I thought it was because he didnt want me anymore.
We had only been together 2yrs when the illness started and by 4yrs where aware of how savage it could be. We didnt talk though, I had no idea of impact on him & he no idea of the emotional impact on me.
Chronic pain is debillitating, it wears a person down, bit by bit, slowly crawling until eventually numbness is all that is left. Our fragile bodies aquire fragile minds.
Its a hard cycle to break & can have devastating impacts. Be aware of your mental state. Do not be embarressed to ask for help. Depression is treatable & it isnt your fault.
Part of my recovery involves a small dog called Ollie. I had found when at my aunts no matter what subject we broached I didnt get stressed or upset because the whole time I had been petting Bruce, her dog.
I even used to miss him once I came home. I realised his calming effect lasted hours. Id always put pets far from my mind telling myself im to ill to care for one.
I spoke to my husband who was also against pets, fearing he'd become any pets main carer. I vowed id look after a dog. I needed something that needed me.
We rescued Ollie a 10mth old JackChi 3mths ago. The time that I put into him keeps me occupied, I spend less time pondering my disabulities.
He is my little soul mate, where I go he goes. At home he does not leave my side. If im bed bound he is here with me either asleep on my legs under the duvet or we play little games I can manage.
I pet him all the time so my stress levels stay down. When im up & about he is my little companion, taking away the lonliness & isolation I felt by being by my side no matter what.
My aim to look after him myself is paying off. I manage to walk him 3x a week. He runs like a mad nutter for half n hr off lead as on lead he knows the pace isnt fast.
Best of all the whole family love him & he has had a positive impact. Especially with stress, everyone is so much calmer & relaxed.
Im still in recovery now, its not over yet. Consultant said may take a yr to stabalise me on the lidocaine but thats ok because iv learned to communicate with the people closest to me & I have Ollie.
To smile every day rather than cry, to see life is only over when I give up made me want to fight again. Not my disabilities as they are incurable but my mental health.
The one thing I could have a degree of control over. So I took control back. Its been a yr since I blogged. This is my 2nd blog in 2 weeks.
Whatever you do, dont give up, pick your battles wisely & survive because being a victim wont get you anywhere but stuck.
Sunday, 7 October 2012
Find me on twitter!
Friday, 5 October 2012
I strained my back going for a wee !
I need to somewhat explain this sentence :)
I woke this morning with a full bladder nowt unusual in that, I was stiff from Fibro & Dercums, nowt unusal with that. So I podded slowly along the hall to the bathroom but side on like a crab as I was pulling my pelvic floor up in the hopes of not peeing on the new landing carpet (not that I'd of been more willing had it been old).
I gently sat on the loo allowing my heavy bladder to empty, as I took a piece of toilet paper in my hand I forgot to fully rip along the tear line meaning I accidently pulled the roll off & it tumbled to the floor.
My natural response as you would was to lean forwards & pick up the loo roll, as I reached the furthest part of the lean a piercing pain shot up from the muscle to the left of my tail bone.
Grabbing hold of the disabled rail that surrounds the toilet I try to get up off the toilet. I didn't bargain on the pain I was about experience (bearing in mind my pants where still around my ankles) I dropped back down onto the toilet, while my feet shot forwards Ouch bloody Ouch so now not only do I have intense back pain, my feet are now entangled in my pants (pj bottoms) on a tiled floor.
Unable to lean to untangle my feet I wriggled them around until they where free & I knew I'd b safe to attempt standing again. As I eased up & soon realised no way was I gonna be able to stand up straight.
Sticking my head outta the bathroom door to enquire where there any non family members in the house me & my bare asse took teenie weenie tiny steps back to bed.
With the help of the hubby I was soon clothed again, a warm drink & an awesome cocktail of pain relief. I watched TV for a while but noticed even the smallest movements caused me to whince with pain. I decided no movement would be the only way I could be pain free.
When I say immobile meant pain free I wasn't joking, to the point I kinda forgot the next time I needed a wee, trying to sit up in my 'normal' way - the pain was tear inducing & I nearly peed myself.
Standing as slowly as the pain would allow me I managed using furniture
to go to the toilet. Glad for my rail I was able to get off the toilet (this tme no more incidents with my wonderful nimble fingers & lightening fast reactions) I actually felt like I was going backwards in time while I made my way back to my bedroom.
Once again laid down I realised immobile didn't equate to pain free, I formulated that if I went to sleep my brain would disconnect from the pain forget it existed & I'd be pain free. I found the most comfortable possition I could & fell asleep.
Sadly I'm awake but not pain free, its a severe muscle spasm. Who knew that taking a pee could be so dangerous.
Thursday, 4 October 2012
Last night I was reminded of the story "The Princess & The Pea" where no matter how many mattresses were on her bed, she could feel the small wee bump that was the pea.
I can only go to seep on my left hand side in the foetal position usually with no blanket, as I get to hot if I'm covered.
Last night I clambered onto my bed & assumed my sleep position, my body felt like lead I felt exhausted as I'd had a really emotional afternoon.
The emotions revoled around hurt & anger (explained in page Emotions & Physhical Pain). So here I was snuggled up & all of a sudden I felt something digging into my ribcage.
I tried to ignore the digging because I was so fatigued that I didn't even have the energy to move properly. I'd tried gently tilting my top hip backwards about an inch, but half way through the manouvre my left hip bone came into contact wth the mattress & a searing, shooting pain twisted its way through my hip causing me to jolt back into place.
I tried telling myself the digging sensation was either my Fibromyalgia or Dercums Disease because that would mean it would ease off as my painkillers kicked in.
Alas over an hour later the digging persisted meaning I'd have to summon the energy to move & find out what was causing it. I managed to push myself enough that I could grapple around with one hand, much to my annoyance I didn't fnd anything.
I hit the bed with a thud & again assumed my position, to my delight no digging just a tender spot but I didn't care. My eyes rolling in my head I could feel myself falling asleep.
Less than an hour later I was woken by 'The Digging Pain' oh the joys. I knew there wasn't anything underneath me. I was also feeling very achey all over & had sharp, stabbing pains in my right hip.
I realised I must of gotten cold & now would be a good time to clamber under my duvet, I nipped to the toilet & stripped off replacing what I had on with a t-shirt & pair of panties, as when I sleep under the duvet I get mega hot.
My sleep was fractured & most unrefreshing (that would come under a different blog title so won't go into details) .but at least there had been nothing digging into my ribs.
Once I was awake & as soon as I was flexible enough to move I pulled back my bedsheets but found nothing ? I poked aroind my support mattress again nothing ? Hmmmmm what on earth was it that had caused me to be so uncomfortable ?
Feeling cold as I was no longer snuggled under the duvet I pulled on the top I'd removed during the night, drank my mug of hot milkie coffee & took my medication. As usual my meds soon blew my head off, added to the fractured sleep I'd had, nausea, dizzyness & the unfailing urge to fall asleep soon kicked in. I decided it would be best if I got my head down for an hour.
I assumed my normal sleep position, low & behold the digging pain was there - more awake & able to move I instantly realised what it was. I was laid on the seem of my jumper. A jumper I have slept in many times before, that had never bothered me.
For whatever reasons last night the weight of my body against the seam of my jumper had caused me pain. Yet I'd of sworn I was laid on a small piece of Lego brick or similar. It reminded me of the story " The Princess & The Pea" my reality however is that I have Fibromyalgia & Dercums Disease.
Over the last few months I have been noticing small things that are different. My recovery time from my partying overnight in Blackpool was wicked & I am still after 12 days suffering with chronic fatigue when I am awake. Which has led to me suffering with serious Fibro Fog, poor coordination, balance & memory problems.
The pain in my left arm is constant & none of my medications work at touching it. It feels like a dead weight from shoulder to elbow. Whereas 3yrs ago only my forearm felt like this.
The last thing for now that I have noticed is how long the episodes of Fibro Fog have been lasting, scarily for me without me being aware until something happens that draws my attention to it.
I'v started to wonder what the future holds for me, a least wth the Fibromyalgia I didn't have to worry about it being progressive. Realising now that although it was a massive relief to get the Dercums diagnosis as it explained so much about what was going on that didn't fit wth Fibromyalgia that I now have to contend with n illness that will eventually leave my whole body racked with permanent pain & that I will suffer from dementia.
On top of that my doctor told me last week that the Osteoarthritis I had in my hands was now in my knee's & ankles - another progressive, painful illness. Explaining to me that the bony nodules forming on my fingertip joints are Hebredon's Nodes which are usually not painful once fully formed where painful in me & probably always will be because of how Fibromyalgia & Dercums transmitted pain signals.
The real force of the journey I am has finally registered I just hope I am strong enough to get through it.
Saturday, 29 September 2012
We often talk about how emotions trigger pain responses in those of us that have fibromyalgia.
I'd like to share my experience with you as a continuation from my post "I don't want to ruin my memories".
Since my amazing night out I have struggled with fatigue so bad that being awake a couple of is the most my body has allowed me.
The thing is when I say fatigue I don't just mean I'm a little tired, a little sleepy. For me it means arms, legs and torso like lead weights. I'm going t ue @bydls Spoon Theory to explain my energy.
With the kind of fatigue I'v been experiencing say I awake with all of 5 spoons, it takes 2 spoons to get off the bed, pee, wash n put clean pyjamas on.
Then I take my meds which takes 5 spoons off me so I'm already running at -2 spoons and as you can see I havn't done much. As the high from my meds wears off (which takes about 1.5hrs) I gain 2 spoons back.
This is the cycle I am stuck in, making it worse was going to work when I was already running low on spoons leaving me in he minus spoons category pretty quickly.
So other than my couple of hours at work this week which left me emotionally and physically depleted I have not ventured outside of my house, my bedroom that I usually think of as my sanctuary soon started to feel like my prison.
My bed no longer looked like my supportive, comfortable place to sit, but a hole that wanted to swallow me and spit me back out feeling worse than when it sucked me in.
I had expected to be fully recovered Tuesday at the latest but I did'nt just getting a bath took every ounce of energy I had. I felt totally wasted, washed out, exhausted.
Through all the fatigue my pain had'nt been to bad, just small niggles in my lower back and knees, which was probably a mixture of dancing then being laid up for a week in bed.
That was until today as the annoyance and pissed off ness of still being trapped in the house started to kick in, the reality that I only have enough energy to wash and dress myself, my whole body feeling like someone put a tube up my asse n filled my insides with concrete.
I begin to roll my thoughts backwards should I of gone out, was I mad to do it. Why do this to myself I knew the fibro & dercums where gona make me pay, but this much and so severly ?!? No I didnt' bargain on this.
My anger peaks as I realise how much the fibro and dercums want to take from me and its way more than I was willing to give. Its been 3yrs since I last #partied 3 whole years, and I gt pissed that time to and I was fine by the Tuesday maybe a bit groggy but functioning.
So obviously I'm realising that I'm a damned sight worse than I was 3yrs ago. The dercums and osteoarthritis are degenerative. This realisation though only added to the mood I was in.
When I'm upset, moody, down I have a habit of withdrawing into myself. I am quiet, sullen while my head trys hard to pull apart the negativity going on in it.
Those feelings though start to translate into pyshical pain, at first my knee's start to ache, then I notice my costochondritis (chest muscle pain) kick off with sharp stabbing pains, next the lipomas in my left arm from the dercums start to burn and itch n all I want to do is rip my arm to bits but that causes them to throb, making my arm ache from my elbow to my shoulder. For the icing on the cake the muscle in the left side of my neck is going into spasms lasting upto 30 seconds at a time.
I feel like I'm punished for having a bad day or negative feelings - I'm not sure how to put it into words. All I know is when I have any feelings around anger, hurt, humiliation, anything like that it results in pyshical pain. So then I get more pissed off which causes more pain.
It's impossible to live #happy permanently, it also does not help that due to the fibromyalgia I already have low seratonin levels. Knowing when t clamber off the emotional roller coaster is what's important.
This is where I can genuinely say being a trained counsellor gets me by. I am emotionally aware and once I recognise I am on a downward spiral I can and do counsel myself out of them. I will also seek support from my peers and friends (my twitter lovlies).
Sometimes I think to be pain free a third of the time I'd have to be numbed totally, my emotions totally turned off. I would need to be voided of a realy important part of who I am as a person. I am accepting of pain or pain but not when I'm already down, it's like pouring salt on an open wound.
I apologise if some of this post seems fractured or that I'v rambled but I had to do it, I needed to rant about how frikken unfair my illnesses are in there harsh treatment of me for going out for the first time n 3yrs then punishing m again for having negative feelings.
#Apply / #Appeals #ESA / #DLA #PrintOffYourSymptomsIndividually n post.
Struggling with ur applications and appeals - print off all ur individual symptoms, use the tender spot diagrams to highlight ur own pain AND send in with all ur paperwork. #MakeThemUnderstand without a shadow of a doubt how ur ilness affects you as so far they are tarring us all with the same brush.
Fibromyalgia (A New You): Living With Fibromyalgia: Insomnia (caught in the nothingness) Poem by Georg...
A poem about insomnia
Friday, 28 September 2012
I don't want to ruin my memories !
On the 22nd September I went to Blackpool to celebrate my little sister's 22nd birthday - I'd bargained on feeling woeful and that I'd need plenty rest after the fact.
The week leading up to 22nd I'd rested and looked after myself, eaten properly, gone to bed early pulled out every stop I could to ensure I wasn't ill on the night.
With great pride and joy I managed it, I was well enough to go to Blackpool with the girls. I felt better knowing that we where all staying overnight and that our hotel was 5mins away from where we would all be partying.
We where all wearing fancy dress so I'd incorporated knee high flat boots into my outfit and felt confident I'd be able to cope. My little sister wanted us to all meet at her friends no later than 11am.
We arrived n the drinking started - I just had 2 mojitos watered down with lemonade - our bus arrived at 1pm to get us underway. We arrived at our destination before 2pm and started to get ready - we had an awesome giggle 6 girls all getting ready to hit the town in fancy dress.
I straggled as much as I could as the thought of hitting pubs at 4pm filled me with dread, although even with straggling I was ready by 5pm and so we hit the pubs of Blackpool.
Most of the pubs where empty at that hour so the 6 of us reigned supreme taking to the dance floors and having a whale of a time. Slowly as the night progressed more n more people where out on the town.
We bumped into a group of lads my sister and her friends knew from home and they tagged along with us making the evening even more funny. around 11pm I was getting slight niggles in my lower back and knees - as I'd not been drinking I was able again to take my full dosage of pain meds.
But even with all the precautions by me at half past midnight I made the descision to leave the girls to party and head back to the hotel - 3 of the girls went back with me as they'd had enough alcohol for a week.
Less than half n hour later my kid sis rocked up at the hotel with the other girl still standing n 3 of the lads we had ll met - they'd missed their last train home and where stranded (that's their story) !
Out of the 4 that went back to the hotel first I was the only one still awake chilling with a cup of coffee - I joined my sis, her mate n the 3 lads in my sister's bedroom - we all stayed up talking and laughing till gone 4am then I totally threw in the towel and went to bed.
I was awoken at 9.30am with a cuppa tea by my daughter (she was one o the 6) - struggling to move I took all my pills and managed to go for a short, slow walk using my girls arm as a guide to go to the arcades. To my delight there was a McDonalds opposite where I spent most of my time ordering coffee.
We arrived home at roughly 1pm where I went straight to bed and hit the sack where I slept until 7pm.
Thinking it would only take me a few days to catch up on my sleep I went back to bed just before midnight on the Sunday and fell asleep before my head hit the pillow.
Monday came I awoke feeling okish - although the effect of my morning drugs soon made me feel awful - my head went west so quickly. I arrived at work for 12.30 dinner and was informed my clients had cancelled. On the journey home in the car I struggled to keep my eye's open.
I clambered into bed for a 'nap' and was awoken at midnight by my hubby with a drink and all my meds as he knows only to well what happens if I miss to many doses - withdrawal which is an ugly place to be.
I dropped straight back off to sleep and slept through till 2pm on the Tuesday. I spent the majority of Tuesday laid up on my bed resting only coming down to watch TV with my hubby around 8pm. I returned to bed and sleep around midnight but tonight sleep would come in fractured segments due to the amount of sleep I'd already had.
I woke Wednesday morning at 7am wide awake so got myself ready for my kid sis and her daughter coming to visit. Although we did nothing else but talk when they left I realised how exhausted I felt, I tried to fight it but lost.
Awoken by my daughter at 6pm I made the descision that I would go to the gym as I was now sore and stiff. I didn't work out hard at all I just made sure that I stretched out all the knots in my muscles. The gym session woke me up a bit and feeling more comfortable and alert than I'd been all week I went home feeling good, so much so that I thought the Yak fatigue I'd been feeling would pass.
I didn't fall asleep after I came home which was good. I hit the sack at midnight and awoke at 9.30am feeling quiet refreshed. I got to work at 12.30 finishing at 3.30. Much to my disappointment I was again flagging in the car and struggling to keep my eyes open. I went to bed as soon as we got home.
Awoken at 8pm by my hubby for my meds I came downstairs to spend some time with him. Within a couple of hours AGAIN my head was falling while I struggled to keep my eyes open. We went to bed at 11.30pm - where much to my aggravation I couldn't settle, the last time I saw the clock it said 02.40am !
I remember waking at 07.30am busting for the toilet, I laid back on the bed feeling awake enough but decided to try and get another couple of hours as its Friday I had no work and wasn't expecting any visitors. It musn't of taken more than 15mins before I was asleep again.
I was woken with a start by my hubby who said "it's 6pm you need to try and get up" I really thought he was winding me up. But soon realised he wasn't and that's when I started to get the hump.
Yet again I'v lost another day to sleep to the fucked up world of fatigue. I find this part of having fibromyalgia and dercums disease the most depressing. Pain I can deal with most of the time, sore tight muscles can be stretched out with exercise. Fatigue though isn't as simple as 'having a good sleep' !
I'v had loads of sleep yet still my body demands more. It's not even like I get a choice because I don't. My eyes start to close and when that happens no matter what I do I can't stop myself from nodding off.
I keep looking at the photos of me having a wonderful time to remind myself it was worth it, but now in my 6th day of recovery I am beginning to ask myself was it truly worth it ?
I don't want my happy memories to be ruined by my illnesses and recovery time, but even with my immaculate planning am finding 6days way to long and as I sit here typing this I cannot claim to be fully recovered. Of course I'm hoping that the king Kong sleep I have just endured will finally put an end to the fatigue I'v been plagued by.
I knew by Monday I'l never do a night out again in that way, it took more from me than I am willing to give and still keeps taking. When I realised I won't ever be doing this again it didn't upset me cus I thought I'v done it, enjoyed it, had a blast and nothing can ruin that for me not when I have amazing pictures to look at.
What I'd not bargained on was the length of time to recover, fatigue and sleeping away my life are the major causes of depression in my spoonie existence and slowly the smile I had face is being replaced with tears and frustration at the punishment being dished out to me for doing something that people take for granted.
I'v been reminded that it truly DOES control my life and no matter how much planning I do Fibromyalgia ad Dercums Disease have there own rules of life and went I push the boundaries I will pay a heavy price.
Looking forwards to this particular fatigue flare to end and keeping everything I have crossed that the flipside isn't insomnia !
Tuesday, 18 September 2012
IV had some awful & some brilliant experiences with Gp's - I want to share some of these experiences with you & debate some of the issues raised in the news today about complaints about Gp's rising in the last year.
I moved to the place I live now 13yrs ago & registered with the local GP. I wasn't ill at this point so all was well & I found the GP was ok - although rarely saw him.
I became pregnant & had a horrific pregnancy leading to my youngest Ethan being born 2mths prem by emergency c-section (which is beleived to have accelerated my fibro).
Slowly I began to feel more & more ill, I had pain so bad in my right hand it felt crushed, the fatigue was keeping me bed bound for days. I had chronic IBS and to top it off was suffering from depression.
Again & again I went back to the GP again & again he didn't seem interested in what I was telling him. On one particular visit he lost his temper with me & shouted at me that I was causing my own *emotionally induced pain* it was in my head & that if I stopped being upset all the time -'d feel better.
My initial reaction as I'd been poorly for 2yrs by this time was to jump across his desk & smash his face in but I didn't I left in tears like nearly every other visit had ended.
I was in my 1st of my counselling diploma at the time & shared with my peers what had happened, I talked things through with my peers & decided it would be appropriate for me to tell the GP I was not happy with the way he had treated me, also how it had made me feel.
Feeling emotionally supported by my peers I went to see the GP again, this time though I took my husband with me as I didn't feel strong enough to go alone. I sat in front of the Gp's HUGE desk shaking & breathing off the hot prickly tears trying to escape down my face.
With my voice shaking I mustered the courage to say " I am angry at the way you spoke to me at my last appointment " what looked like rage to me spread across the Gp's face, he then roared at me " you have NO right to be angry with me " to which I retorted " are you saying I'm not allowed to have feelings " his response was to tell me "I no longer wish to be your GP I want you to leave now ".
A few days later I received a letter saying that I, my husband & 3 children had all been struck off ! I was more angry than I'd ever been.
I signed on with a new GP in the same building but with a different practice. My new GP was lovely he listened to me & importantly didn't tell me my pain was in my head, although he didn't know what was wrong so sent me to see a rhuematologist.
The rhuematologist did blood tests for arthritis, all my results came back negative. He told me it was most definately arthritis & sent me for physiotherapy. The pain caused by the physio was excruciating.
One day my mom called to tell me she'd been diagnosed with something called Fibromyalgia & would I like to see a consultant that specialised in the illness. At breaking point I agreed.
My parents paid for me to have a private appointment, I took with me AA book filled with symptoms, time I'd been ill for, everything I could think of. He asked me to go for a walk while he read it all.
When I walked back into the room he said " from reading this I am nearly 100% sure you have fibromyalgia, there is one test I need to do " that's when he tried pressing the fibromyalgia tender spots to which I had 17 out of the 20.
Almost immediately I felt releif ( I was unaware of the fight I was about to get into to get correct treatment) although left his offices with sleepong tablets to which he had said " you can take these for the rest of your life or until there is a cure for fibro, as your body will grow accustomed to them & eventually they won't make you sleep but will help with other symptoms ".
My GP was brilliant with me when I told him about my fibromyalgia diagnoses (I also immediately quit seeing the arthritis doc n stopped pysio) my GP sent me to a different pysio who was way more gentle with me meaning it didn't hurt as much doing the exercise.
BUT that was the beginning & end of my treatment for about a year, until that is all of a sudden the pain began to spread throughout my whole body. GP put me on amytriptylene for the pain. Unbeknown to me at that time me & amytriptylene do NOT mix well.
Unaware of other drugs available, my rights or anything else for that matter I bumbled along for another 2yrs until again a bad flare had led to a severe depression leading to me nearly having a breakdown.
I had joined Twitter in 200c but didn't really get it, being bed bound & feeling like I'd lost my mind my mobile phone became my only connection to other people so in early 2011 I began tweeting. I soon became aware of people called #Spoonies.
Spoonies being a person with a chronic invisable illness - the term had been coined from a writing by @bydls called 'The Spoon Theory' (this can be found on another page of this blog). I began to connect with these people & soon found the support I had wanted so much.
I learnt much about other drug treatments, the names of all the individual symptoms that made up fibromyalgia & with this new found knowledge I approached my GP. At first I asked for venlafaxine which he gave me, although the chronic pain persisted.
Slowly over time I asked for new drug treatments by name :) I am now on
Dihydracodeine 90mg slow release 3x a day
Gabapentin 600mg 3x a day
Venlafaxine 37.5mg 2x a day
Naproxin 500mg 2x a day
Zolpidem 10mg 1x a day
Levothyroxine 100Mc 1x a day
I also take vitamins B12 & rosehip with consent of my GP as although we think vitamins are good for us they can cause adverse affects if mixed with long term medication.
Ie: if taking Levothyroxine you shouldn't take sea kelp.
What I have learned is that even with a good GP I have to take the lead & tell him what I need. Learning the names of the serperate symptoms really helped to (I have a blog:
call it by its name).
I do look back at times & wish I'd made a complaint about the GP who struck me off as I have since learned he is like that with most of his patients ! He likes to be #right he doctor you stupid ignorant patient ! Although I had the strength to tell him how I felt at the time, I was to vulnerable to take it any further & also very much unaware of my rights as a patiemt.
So they say now complaints are rising because people find it easier to complain ! I don't agree because there will be thousands of vulnerable people being treated badly & not complaining.
If we all complained they would see a ten fold increase in what they are already seeing ! Eventually I got lucky, I got a GP that listened & allowed me to tell him what I needed. He was willing to try some of the drugs I suggested. If he didn't wan't to give me a certain drug he explained why. By meeting eachother half way we have built a wonderful doctor-patient relationship.
I know my doctor-patient relationship is rare in comparison to what other people go through. Doctor's are less inclined to listen, less compassionate, less empathic & some come across as authoritarian control freaks - things must change in the Uk when it comes to General Practitioners !
The link below is the news that's hit the headlines today about the soaring complaints against doctors ! If only the other 1000's would speak up to like I wish I had 11yrs ago xx G