Friday, 26 October 2012

"Sorry Its Not A Flare Its Your New Normal."


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.

Xxx Georgie

Thursday, 25 October 2012


Hey guys, long time no post. Sorry for not posting, last I was here my grandma was really sick. She died Monday October 15th. I felt like a zombie all through the wake and funeral. I was just going through the motions of living, not actually there. Even after. On Sunday I had a three hour long panic attack which was hell. You would think that a death would bring the family together, but it's torn us all apart. My aunt's true colors have shown (a phony bitch) and my uncle just isn't speaking to anyone. Mom and I have started doing dinner with my grandpa once a week. He puts on a good front but he's in shock. They were married for 53 and together for a total of 60. He's never been apart from her so he's lost. I think my mom is doing the worst though. She was the closest to her. She sobs every day and I feel just so helpless that I can't do anything to make her feel better. I know it's healthy and all part of the grieving process but I wish I could make it easier for her. On the upside, we both conquered our fear of public speaking! I did two of the bible readings at the funeral and mom did the Florence Nightengale tribute seeing gram was a nurse. Everyone said how well we did which was shocking. In middle school if I had to talk in front of the class my face would go red and I would cry. So I've been extremely flared from stress and then today, SURPRISE! Sinus infection. I can't catch a freaking break!!! One thing I'm very happy about though is that my dad has really stepped up though all of this. He's never really been a father but he takes me out for lunch or dinner and back to his house to watch funny videos to cheer me up and keep my mind off of it. It's a really nice surprise.
That's all for now~
Find me here

Rest in peace Janet E. Hanrahan July 3, 1938 - October 15, 2012

Wednesday, 24 October 2012

I Quit


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

Fibromyalgia (A New You): Doctors Receptionist's Need To Back Off !

Fibromyalgia (A New You): Doctors Receptionist's Need To Back Off !: SpoonieLife 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 t...


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 !

Doctors Receptionist's Need To Back Off !


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 ! !!

Here goes:

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

Doctor or Receptionist (who decides if I'm an emergency)


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 ?" !

Xx Georgie

Thursday, 11 October 2012

SpoonieLife: Doctors and Specialists: The Good, The Bad and The downright Useless !!

The bad and the Useless:

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…’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. ~*~

The Good:

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

A Young Girl Trapped in an Old Body

Hello again~ so, everybody tells me that I'm one of the youngest fibro sufferers they've ever met. And you know what? It SUCKS. I'm 17 years old and I'm bed bound, have to use a shower chair, and am getting a cane. I can't do anything people my age do. And because people my age are so immature, when I was diagnosed and started homeschooling, all my friends left me. They couldn't bother with someone with a disease like this. I was already struggling with the diagnosis and that was just like a second knife. But now I prefer being alone. I'm happy staying in with my mom because I can complain to her about the pain and she doesn't get mad. And I've heard so many people say "people who are diagnosed younger have a better chance at getting better." Do you know what I say to that? BULLSHIT. There are no meds for people under 18 that will help fibro. And people who are diagnosed older have gotten to live their life. I always worry what will become of my life. I want to go to nursing school, but will I be able to? Will I be able to have a job? I don't want to have to rely on others or go on disability. I just want a good life. Who knows…
Find me here

Extreme Flare.

Hi all~ so I am in quite the extreme flare right now. Would you like to know why? #1: It's raining and the weather can't make up its mind on what to do and #2 STRESS STRESS STRESS. If you couldn't tell, I'm really stressed. My grandma has Alzheimer's and was placed in a nursing home in June. She had been doing the best we had seen her in a whole and then BAM my aunt gets a call from the nursing home that she is unresponsive. Hospice told us we'd have 1-6 months. So my mom goes up to the nursing home immediately and the nurses tell her that my grandma is only responding to pain. So as usual, my mom leans in and goes "open those eyes beautiful" and god dammit my grandma opened her eyes and started to cry and then pulled my mom in for a hug. She did that twice during my mom's visit. So yesterday my grandpa sat with her from 11am to 4:30pm and my aunt sat with her from 4:30pm to 6pm when mom and I got there. She looked so little and fragile. It killed me. When I leaned down to her she cried and hugged me. And my mom wears a necklace that I gave her for Mother's day about 6 years ago. My grandma pulled her forward by it and was very upset. My mom and I decided to put it on her and the moment we did she calmed down and fell asleep. So I am currently a wreck, both pain wise and emotionally. I have to take pain meds to be able to sleep. And all I want to do is cry. My mom's going back up tonight but I can't bring myself to go. I feel like a coward but I just can't do it. Taking care of her has been my everything for the past 5 years and to have her ripped away from me so suddenly…I just can't handle it. A while ago my grandma's best friend told me that since the day I was born I've been the apple of my grandma's eye. It really surprised me seeing I didn't have the best relationship with her until she started to lose her memory. She likely won't make it to the weekend, and in a way that's good. She won't be suffering anymore. She'll be with her parents (she lost her mom when she was 13). And I know I'll have another guardian angel looking over me.
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P.S. Sorry that this is mostly unrelated to fibro Georgie~

Tuesday, 9 October 2012

The Fragile Mind.


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

Brenna's Introduction!

Hello all!! This will be a short post as I'm just coming down with a cold. I just wanted to intoduce myself! I'm Brenna, 17 and senior in highschool. I was diagnosed with fibromyalgia at the age of 14 my freshman year of highschool. I started homeschooling seeing it was easier for me. Most of my pain is muscle spasms in my back, but I also have restless leg, insomnia, chronic fatigue, ect. I also suffer very severley with depression and anxiety, I've contemplated suicide many times and I used to cut myself. I'm on Lyrica which takes away some of the pain but not enough. I take Percocet to take the edge off, but again it doesn't completely take the pain away. My mom also has fibro, she was diagnosed a year after me and always says I passed up the fibro to her (haha very funny.) We've just started acupuncture to try and get my pain under control. A much as I hate needles, I honestly love it. He says it will take a couple treatments to help my pain, but my insomnia is completely gone. For the first time in my life I can actually sleep a full night!! It will also help the anxiety and depression which I have found to be true, I don't have as many panic attacks and my urges to cut have gone away. I'm getting a cane soon, I've recently started to have trouble walking when I flare. I'm afraid of the looks I'll get, but then again I can just hit them with my cane. Well if any of you have questions for me, feel free to ask, and I'll post a longer entry tomorrow! :)
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Friday, 5 October 2012

Fibromyalgia (A New You): Who Knew Peeing Was So Dangerous (Nimble Fingers &...

Fibromyalgia (A New You): Who Knew Peeing Was So Dangerous (Nimble Fingers &...: SpoonieLife I strained my back going for a wee ! I need to somewhat explain this sentence :) I woke this morning with a full bladder n...


Who Knew Peeing Was So Dangerous (Nimble Fingers & Lightening Fast Responses)


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.

Xx Georgie

Thursday, 4 October 2012

Fibromyalgia (A New You): I Felt Like "The Princess & The Pea".

Fibromyalgia (A New You): I Felt Like "The Princess & The Pea".: SpoonieLife Last night I was reminded of the story "The Princess & The Pea" where no matter how many mattresses were on her bed,  she coul...


I Felt Like "The Princess & The Pea".


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.

Curling up under the duvet to warm my aching, sore muscles I soon noticed there was no digging sensation, pleased it was gone & to tired to care what the cause had been I fell asleep.

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.

Although Fibromyalgia is not progressive Dercums Disease is & at the time of diagnosis my Dermatologist explained my independent diagnoses of Fibromyalgia still stands as I have 16 out of the 18 tender points & some of the symptoms of each differing.  Although they also share many, pain & fatigue being the worst. 

The Dercums Disease also exaggerates & exacerbates my Fibromyalgia symptoms meaning the Fibromyalgia is a lot more painful because of the Dercums.

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.

xx Georgie