Monday, 12 September 2011

pain, pain go away come again another day!

welli am still in pain from the mid to top 1/2 of my body.

i know if is not the swimming as i went again on saturday to try and stretch it out, but no ease up on it.

the whole top of my spine, shoulders andhards hurt. have been maxining out on codeine and spending time in bed alot.

slept friday afternoon but not saturday or sunday afternoon. have had unsettled nights as well at weekend not being able to get to sleep.
am runing out of gabapentin so having to ration them out so don;t think that is helping.

that it for now, pain really wears you out mentally, tried to go on wii stepp for 6 mins yesterday but legs too heavy.

Friday, 9 September 2011

hydrotherapy seession 3

well it is now friday had dhyro on weds and am in agony from top 1/2 of spine and wrists.

did new twist and push exercises with float and felt so well after last session i did a few more - teach me to show off.

went swimming after with leo took sausage in seb did stuf with leo felt ok then but been in agony since max. out of codeine etc and heatpacks in bed even hands hurt that it for now.

Wednesday, 7 September 2011

weight gain

weighed myself on the wii last night as i down at myself and think i look like when i was pregnant with the kids.

i have put on 8lb in 3 months. looked through my record over past year and half and i have put on 11/2 stone, a stone in a year then 1/2 stone in past 3 months.

need to serious watch myself.

i try and exercise but i suffer so much fatigue after short periods of activiity and need to rest for a couple of hours that i spend more time horizonal than i do vertical.

will try and be more active and try and do abit more housework but using the "pacing"method and watch my diet more carefully.

don;t think i eat much but have been conscious of weight and trying to eat less carbs but that just makes you feel hungry so am making an effort to eat cereal in a morning to fill me up and watch what i eat during day.

i am often too tired to prepare meals though, even a bowl of cereal if sseb has gone to work - so will try harder.

yesterday had a couple of cereal bars, toast for lunch then potatoe wedges and homemade burger for dinner and a banana and small handfull of choc m&ms and 2 plain biscuits that is really it.

did 30 mnis on wii 2 x 6 mins on wii step and 20 mins of yoga - will try to do 30mins exercise everyday.

sooo tired after holdaiy though didn;t get up until 10.30am. my whole body feels tired and ehavy.

Tuesday, 6 September 2011


have just come back from a lovely week in scotland.

it took 2 days to get there and back as we had lots of breaks and stayed in a hotel both ways.

i was up the 1st night in agony but was so pleased to be travelling again and i had instigated the holiday so did not want to complain.

we finally got to scotland about 3pm and had a lovely caravan where i crashed out on the settee whilst the others unpacked. normally it would have been me planning and organising everything. got some leaflets from reception to plan our week.

on teh 2nd day we went to a lovely castle an hours drive away we parked in disabled bay and walked the short distance to the castle and there were lots of benches around for me to sit on. in the castle i took it at my own pace and sat and read the liteature whilst the kids moaned i was slow. the castle was really child friendly and had hid little lego pieces for the kids to find and keep them amussed. cuzean castle ayrshire a great find. after the castle we sat outside and planned our next move the cafe with a view of the sea.

after that we got in the car and drove the the play area and i sat by the swan lake whilst the kids had a play. there was a lovely beach i found as well.

we went home and decided to come back the next day as it was so good. the 3rd day we got a boat to the isle of arran and it was a great adventure. they had bar/lounge areas where i laid out on the settee to rest my back instead of having to sit up.

when we got off the bus, there was a bus stop at the ferry port so we got an open top bus the the castle, i struggled upstairs but was not dissappointed as it was like a white nuckle ride going along with the wind in our hair and sweeping closely past all the overhanging trees.

the holiday made we realise that if i accept this condition i can still have the life i use to love and travel and go out more instead of staying in the house all the time laying on the settee thinking tomorrow i will be bettter. any level of pain is worth it to go and enjoy lifes experiences than stay inside afraid to try anything to avoid pain. a mobility scooter would allow me to reserve my energy to enjoy places rather than using it to get from a to b so on the 3rd day i did not go in the castle as i was too tired adn in pain.

i can still enjoy the life i had if i accept what i have with adaptions and then maybe myt family will help to accept this too.

Thursday, 11 August 2011

Piggyback caring & ESA payments

Went to yorkshire on saturday as sister going on holiday and grandma would be home alone. Was too tired to travel up saturday afternoon really as think we went swimming in morning but oh seemed to want me out of way so that they could get on with their plans. i was considering staying saturday and going up sunday if i could get oh to drive me then get train back but ce la vie.

When i got there sis was in a huff because she had not gone to daycare - i never get any thanks for all the things i do do just moans for other stuff - whereas that centre just creates more work. mam wanted to know when she could go buy scratchcards so i had a lay down first whilst they huffed and puffed.

went for little ride sunday but could not build up any enthusiasm was too tired, but ds found whiplast so that was good. went to humber bridge again sunday but was freezing so moved on to hornsea. by the time i got there was exhausted at snapping at everyone - i just don;t have energy to enjoy anything if i drive.

just remembered leo had sleep over then i had massage thats what we did saturday morning.

was so glad to get back monday from hornsea and weather was awful so had panic attack when went through blind spot in ran. everytime i drive i pass an accident it is so distressing.

anyway got awarded esa but found out i would have got £190 but taken off me becasue oh works. what a waste of a year.

went to hydrotherapy yesterday was exhausting and hurt hands holding onto side of pool, the only thing wasn't hurting was right foot. made fibro worse and musles quiversing in pain and over use. hands, hips still hurting. nice to be in own bed, except i just feel in way here or reluctant to tidy up after 2 teenagers who spend half the day in bed being typical teenagers. i just don;t remember being like that or would have been more helpful to adults around me.

don;t know how to ask for help sometimes, oh thinks he might give up work if not worth him working but doe not want to give up to do housework etc. well thats one way of putting it - as well as caring for me it should be to do all the jobs i cant do anymore, if i am not doing housework, he isn;t then who is..................none of us want tol live in a mess but then tye begrudge me going to yorkshire and using energy up there when all i do is lay and watch tv sometimes. but it is mental drain.

Friday, 5 August 2011

how to stop being the carer

well although my sister has support from ss to help me not have to care so much. this seems to create more work and stress than help. i am toying with the idea of getting rid of it and recruiting her another pa myself, but knowing me it will be more trouble.

the stress is so tiring on what little energy i have and ccreates more pain. we are going out today to royal armouries at leeds as i did not want to put this off. but i am feeling tired and drained at the thought of going up to yorkshire again tomorrow. it should be time to look forward to not dread. but even if i did not do anything the lack of sleep and the noise of telly booming out just drains, plus settee has no arm rests so i cannot lie down on it like i do at home so really hurts my back.

yesterday was good we went swimming agian but leo was not in the mod as he wanted his comics. but it was nice just for a short time,

macdonalds, well i cheated and went there for lunch after, saves me the haslle when i ache all over from swimming. got 2 meals and couldn't pick up so asked for a bag, which she got out, saw me struggling so opened it. when i tried to pick one up nearly knocked it over. but she did not offer to help and started to serve next customer., i was so angry/embarraseed that i was made to feel i was in the way and she wanted to get on to next customer. i finally managed to pick them up and left saying "thanks for your helpt, not that i got any!.

as i walked away from till cleaner offered to open door for me then i banged my head getting in car. realised i had forgot straws so had to go back for them. really tired by this point.

when i got home i tried to rest but realised i needed to try and russle up diinner.

well wil lstop now as tired and painful wrists but will update on afternoon fiasco.

Thursday, 4 August 2011

yeah remember i had a blog today - day 2.

so pleased i remembered without seeing my mention on website, so at leaast my brain is relatively clear today.

yesterday went swimming for first time in about a week. was careful and used my float this time to support my back and did not stay in so low - yes learning to pace mysefl as well. it was really nice and cool as weather hot. oopw just realised that wasn't yesterday never mind must have been day before.

yesterday was thinkging about taking leo whilst no2 daughter woke up up decided to have a nice relaxing morning. she finally got up at 2pm so we stopped at macd on way for lunch then headed to derby for the cinema. got a couple of BIGGER size tops from new look, ok i accept i have put on weight and need to go up 2 dress sizes at last and need to stop looking like a bag lady in tracky bottoms and fleeces.

went to cinema and watched captain america it was really good was so stiff after sitting in cinema for 2 hours, the chairs are nice though as they recline so less tiring as i don;t have to sit upright and support my back.
got back at 8ish and took my meds was shattered but nice day,

today i am going to go swimming with leo when i can get myself out of bed. i have at least got myself some cereal and oj which i have not done in months so have made sure i eat something decent for a change as well. i really need to start taking care of myself as i have no appetite and eat quick fix chocolate bars most of the time. making an effort to eat yoghurts and fruit instead of grabbing the chocs, crackers and philadelphia. promised to go at 11am so have another hour to get myself psyched up.

yeah i passed my tribunal, thinks its the good news that has perked me up.

Wednesday, 3 August 2011


I just forgot i had a blog again until looking at fibro site, this is rediculous don;t know i am suppose to keep a diary when i can;'t remember i have one.

well as said i should have gone to my esa tribunal yesterday, but got a call about 10 when i was still in bed saying i had passed and did not have to attend the tribunal yeah!!!!!!!!!!!!!!!!!!!

so we had a nice day took leo swimming, got L & B a macdonalds then spent the afternoon on settee watching terminator/falling asleep as usual.

it is such a relief to feel someone believes me at last, now i only have dla to battle and don;t feel like i have to look over my shoulder all the time. what little energy i have sometimes i can use it to improve my health and give some support to my family.

me and leo stayed at grandma's for 2 nights this weekend so that although i drove up i had a days rest in between. i am still not enjoying driving. everythime i am on the road there was an accident ont he motorway on the way there and on the way back. and my attention is terrible it takes me a bit to get in the zone driving again so things seem to suddently spring up on me like cars passing or a walll suddentlyapppears to my side and startles me.

anyway we played cards and watched lots of junk 70;s telly, leo loved only fools and horses.
got back monday and fell asleep during sommething else. it is still important to have "familly time" with the kids especially the older ones even if it is just sitting on the settee watching telly.

at one time we woul dhave been jumping in the car everyweekend going to national trust properties or black rock, cromford canal etc but now my only outing is occasionaly to a supermarket or cinema or swimming.

the rest of my day after this exertion is then spent on the settee/bed recovering as i am absolutely exhausted aftwards.

my back has finally eased up but if i move in a certain direction i get the twinge so i know where the week spot is.

our new freezer has been useful and we have stocked up on pizzas, garlic bread and potatoe wedges instead of all the lovely home cooked meals we uses to enjoy, or should i say some of us did but would have to have a couple of different ones going on each time. anyway that is too much hassle so we have resorted back to ready meals again. ce la vie!!!!

massage been cancelled today so finding it difficult to get out of bed, may just fall asleep again but after busy few days i will reserve my energy ready for another cheap cinema trip.

anyway a weight has been lifted off my mind, hope others can feel this relief soon.

Thursday, 28 July 2011

crawling on hands and knees.

have spent the last week on the settee. no change there.

went swimming and did not use my sausage to support the back so it was really weak, then i bent down to pick up a cup of tea and couldn't straighten back up. had to get down on hands and knees to crawl to loo and back.

saved by jade's freiens box set of the tudors, now on number 7 or 8. can't remember. have been downing the codeine so made me sleepy all the time so back to afternoon sleeps and watching telly on iplayer in bed. too tired or in painful to do anything.

hate it when i am like this, feel guilty that leo does not get the input he should from me as that wasw the point of taking him out of school. we are living on rubbish back to chocolate bars and cracker diet as cannot get up to make anything to eat. if i continue like this we will have to send him back to school just because i an not up to looking after him in daytime. all he does is watch dr who on iplayer on his laptop. he is happy it is me that feels guilty.

got the date for my esa tribunal, i am so scared. do they reallly think i would have spent the last year not earning anything if i could have gone back to work. instead seb has been fighting dla, esa, tax credits etc, etc,

i don;t think i will sleep much now this next week worrying about esa. i am sure i gave her lots of examples but she did not elaborate on what i had said. i feel like i am holding my breath and waiting for it to be over, but what then if i fail will they fail my dla appeal as well. that is what i am scared of.

i feel a prisoner in this house i cant get out and i do not want this illness - i want to be nursing, but no matte rhow many times i tell myself to pull myself togetrher i mgiht go swimming or do cookign then i am in bed again for next week. what else can i do as a job. i don;t know.
stayed in yorkshire for a night me and leo had a lovely time, played cards, it was nice to see him getting lots of attention from granny.

i am a burden to my family they are fed up of my illness i am sure, i don;t think the kids want friends round with me sprawled on the settee all the time. don;t want to go any further i will keep it to myself for now as i don;t want to think about it.

Sunday, 3 July 2011

weekend update - forgot i had a blog!!!!!!!!!!!!!

Well good old fibro fog has struck again - i forgot that i had started a blog until i started reading a forum just now.


well today we had a lovely day - didn't wake up until about 10 am had a slow start with breaky then was finally ready to go swimming about 11 am.

Felt tired already adn had to resist the urge not to go - especially when seb said he would nip in the gym first and come in later - eek!

Had woken abit in nigfht and did n't fall asleep until about 12 as forgot to take sleeping pills until i went to be at 10pm and they take 2/3 hours to kick in.l

Me and Leo had a lovely time in the pool, he did lots of swimming and i just kicked around abit today and didn;t swim down to deep end.

Seb didn;t come in until after 12 and i was starting to feel really tired but decided to make effort and go in the jacuzzi and steam room.

Came back and was exhausted layed on settee and watched tv with brenna - got myself a couple of ryvitas as seb had to go get jade and was too tired to bothers. Fell asleep and woke up at 5pm.

Had dinner seb had made and continued to feel drowsy so watched tv again all evening.

Went to bed at 10pm as had a headache all evening felt like a tired one but had slept for 2 hours during afternoon.


Woke up about 10am got up and went swimming. Seb came in pool today so was able to swim a couple of lengths down to deep end. Swam up and down withe Leo doing some widths and alternated on front/back etc to work different muscles. The hot shower was lovely on my back after.

Tired when we got back so chilled on settee watching tour de france. tOOK Jade to matlocck as seb was feeling off it after his night out last night. resisted urge to look in superdrug as was too tired.

We had pasta for dinner and felt abit better after dinner so went in garden. decided to do some gardening for 1st time in months. trimmed some branches off tree in back garden, alternated sitting in chair doing lower ones and standing doing those at arm level.

went in at 8pm and watched casualty - forgot to take sleeping tablets until went to bed at 10pm.

Sunday, 26 June 2011

Introduction -- sunday 26th june 2011

hi, welcome to my new blog,

I am 39 years old, living with my partner for last 20 years and have 3 children and a house full of pet.

and i have FIBROMYALGIA.

this is my journey of how i cope, how i feel, what i go through and the pain and challenges i face day to day.

its sunday afternoon and we are chilling in the living room watching the .......... grand prix (sorry forgot the word - fibro fog) and i am laying on the settee not because i am relaxing but because i have back pain. and i am writing this blog with a splint on my hands because i suffer from wrist pain.

it sunday so for the past few weeks we have been taking our 8 year old swimming but today i have acute back pain everytime i move - like a trapped nerve/sciatica - so i am avoiding moving as much as possible.

i took my teenage daughter out to our local town for an hour to visit superdrug but that was my limit today. i have beeen trying to make an effort as it is hard on the kids seeing me incapacitated like this as i was the one that kept everyone together and organised the family. now i struggle to do anything, housework, dress nicely etc.

all my clothes are too small for me as i have put weight on in the past year and been diagnosed with fibromyalgia so i go for comfort such as tracksuit bottoms, tshires and fleeces/bodywarmers - and thats just in the house -0 i don;t go out much anymore either.

need a break know so will come back soon -

please ignore my typos as it is difficlt to type and i get shooting pains in my hands and down my little fingers when reaching for some of the keys.