Floored.... By A Cold

Its the last thing i needed at the moment, but i didnt see it till it was already on top of me. I didnt notice the few few days worth of symptoms the aching muscles and stiffness i suppose i thought the symptoms were just normal fibro symptoms. Now i am stuck in bed with a runny nose, sore throat and no energy at all.

I suppose i am lucky really i managed to last the whole winter till this point without getting a cold. I have a nephew who is 2 years old who permantly seems to have a cold, the poor little mite.

I was just starting to get used to pacing myself; going slowly taking one day at a time, resting after doing things and not trying to do to much and then something comes along that changes the whole pattern. I hope it doesnt stick around too long i am fed up of the sore throat already. Had to turn all the automated air freshners off already as the scent was catching in my throat. Lets hope this doesnt go to my chest last thing i need is a chest infection and lots of asthma attacks.

Havent been sleeping too well of late, Insomnia is common in Fibromyalgia, the pain has been quite intense, have been taking the pain killers even though i dont like to. Been very irratable what with all my normal Fibro symptoms and what with the cold symptoms too; every noise bugs me, every touch irrates me i want to crawl into a hole until i am better.

My immune system isnt all that great, i could have picked this germy cold up from the hospital last week though. Last tuesday i went to the local hospital with a friend of mine as her four year old severly disabled daughter had a 2 hour fit and was kept in overnight, i went along to keep my friend company and give support to them both although i ended up very tired at the end of the day.

Went to the Fibromyalgia Support Group which was the same day as the hospital trip with my friend but i was in ALOT of pain and very tired after the long day at the hospital, i managed to stay till the halfway point and had to go home because i was so weak, i was struggling to concentrate and i was barely with it. It was nice to see my friends though and to get some support from the group even though i couldnt stay for the whole meeting.

Sometimes i get very depressed and wish things were how they were before i got ill; i wish that i had my old life back and the freedom i once had to do things i wanted to do. I miss all the small things like going camping (which i cant do because i need electric for my CPAP machine to keep me breathing at night, also sleeping on the floor would make my joints worse and getting up from the floor would be hard on crutches), eating what foods i want (IBS makes this difficult), go places without having to plan in advance (making sure its got disabled toilets so i can use catheters etc, making sure i have time to walk about and access because i am on crutches and also making sure i have enough painkillers and pills to cover the amount of time i am out.) etc

Although my blog is mainly about myself and my Fibromyalgia condition i know there are people out there much worse off than myself. My love goes out there right now to my Uncle who is very sick( Blog ) and my mum's husband who is poorly too.

Pain & Hospital Trips

Feeling pretty exhausted today but it has been kinda crazy, usually i sleep in the daytime as the light hurts my head more and also because i dont sleep well. Last night i had to sleep in the night as i needed to try and get into a normal sleep pattern for today and the days ahead, the pain was really bad and i kept waking up crying in pain; Simon soothed me off to sleep everytime and gave me hugs and painkillers when i was allowed them. Simon was very tired this morning as was i, because of the broken sleep; this is another reason i sleep in the daytime as Simon needs his sleep because he works. He did have the morning off work though to take me to the hospital.

We got to the hospital slightly early and booked into Outpatients and i was told that i had to go right to the other side of the hospital for my appointment, this wouldnt have been so much of a problem if i wasnt on crutches and hadnt had a very limited time to get over there. So we got there rather exhausted and was called in to see the Neurologist Nurse.

She seemed very nice, asked the usual questions about medications and such, asked how i was doing. The pain in my head had seemed to be getting somewhat better but in the last two weeks i have been getting more painful spikes and episodes and i told her this. She told me that i could increase the Topiramate i am on and wrote me a prescription to up it 125mg and then to 150mg if i need to, hopefully that will numb the pain more. She also advised me that my Neurologist Dr Clifford Jones is retiring, i was already aware of this information, but she said i would have to go see a Neurologist at Southlands Hospital in Shoreham which would probally just be a one off just to see her and so she can review me etc.

The Nurse is going to write a letter to my GP re everything we spoke about and also get Dr Clifford Jones to write about the headaches and the Fibromyalgia as my GP has been waiting for the letter from him since my last appointment with him in Decemeber and apparently needs this information before she can refer me to see a Physiotherapist or a Rhemotologist.

So hopefully the cogs regarding that will get moving shortly. The pain in my knees has eased ever so slightly but not that much, i keep forgetting to take the homeopathic medicine and need to get more into a routine.

Cant believe how fast this year has gone, i think when you are ill and have nothing to mark the days then time goes much faster, going out to my mums all day tomorrow i hope it doesnt leave me like it did last week when i went out all day, although i am not going to be doing much and just try and take it easy. Trying to learn to pace myself.. whether it works of course is a different matter.. when you spend your life doing things one way and then have to change its very hard..

Forgetting i am ill

Thursday i went to my friends house again, thought i would just be chilling but her computer was playing up. Before i got sick i used to fix alot of computers. So i tried to fix it. I still have it in me to do them, i managed to fix it; it just took me ten times longer and i ended up totally exhausted and very very sleepy by the end of it all. So i waited for Simon to and pick me up. He was late and he called me to tell me there was a huge traffic jam.

Ten minutes passed and i wondered where he was, he called and said a car had hit our car, our car had hardly any damage just a dented numberplate. I was so tired at this point i just wanted to rest. However by the time Simon got to me he was running late for his Clinic for 'Stop Smoking' that hes helping to run. He didnt have time to drop me home so i had to come along for two hours.

We finally got home, i was so tired we got some food watched a little tv and went to bed..

However i was so tired that i pretty much didnt leave the bed friday... saturday ... and sunday. I was totally drained and so weak that at times i could barely lift my head from the pillow. I used the laptop a little, but all plans had to be cancelled and i was so weak that i couldnt even take a birthday present over to my niece! I hope my family understand.

I am feeling a little better today but only a little i slept all night (from around 1am) till about 3pm i am obviously awake but i feel quite weak. I hate feeling like this i hate having Fibromyalgia and i wish i could have my old life back. I would do anything to be able to go back to work so that Simon doesnt have to work so much. I am feeling rather depressed : (

Learning the Boundaries

I try my best everyday to do what i can, everyday the goalposts seem to move. Sometimes i can do small things like take the washing from the washing machine and hang it on the airer other days i try to do to much and end up regretting it for days to come. I find it hard to learn boundaries i wish things were back how they used to be. I wish i was back to how i used to be.

Today i went to my friends house, i went via taxi, it wasn't a long distance but i knew i wouldn't be able to walk it on crutches, at my friends house i wasn't really able to do anything, she has a young daughter but i couldn't sit on the floor and play with her as it would have caused me too much pain in my knees, so i sat in a chair and talked and felt rather useless.

Later Simon picked me up and we went out for a meal there were no spaces close to the restaurant so we had to part far away it took me along time to walk to the restaurant and the car park was slopped and by the time we got into the restaurant i was in a lot of pain, but i did not want to take painkillers as we were out with 5 other members of Simon's family and i wanted to be with it and not sleepy like the painkillers make me.

The meal went okay but as it went on i got more and more tired, more and more sleepy and then the walk back down the slopped car park to the car. Then his family came around our house for an hour or two.

These things may not seem like much but i am going to regret it tomorrow i am going to be in pain in my legs and joints probably for 2 to 3 days, i am probably going to sleep for 18-20 hours for the next 2 to 3 days. I haven't done much; these small things i would have taken for granted before i became ill are such huge hurdles now. Its just so Frustrating.

I went to see my Doctor about the pain in my joints and as i can not take anti-inflammatories i am trying to take glucosamine and also homeopathic medication to see if that can help, i am at the point of trying anything to stop the amount of pain i am. I hate so much to take so much Tramadol and the zombie it makes me become.

Roughly up to date

The benefits meeting at the end of Febuary was to see if i was suitable to go back to work and lady that 'interviewed me' said that i am not going to be for the forseeable future. Had to fill in some more forms for the Incapacity benefit people listing what i can and cant do, why do the booklets have to be so long and complicated. I also had to see my GP to get a Med 4 form for the booklet stating that i have Fibro etc. Geez they like to run you through the mill, if this is what they do to sick people i would hate to see what they do to heathly people.

The Fibro meeting at the end of Febuary was good, wasnt able to pay full attension to what was being talked about as i wasnt quite with it but it was nice to meet up with people i have been in contact with via email/phone etc and there was also quite a few new members to the group so i made some new friends too.

Got my new crutches through, slowly getting the hang of them, my grip in my hands is getting worse, and is also making my hands shake so it would be quite difficult to hold normal crutches, the crutches i have are specialist arthritus style crutches so you dont need to grip much as they have support for your wrist and elbow which is good.

Also with the problem with my hands comes the problem that i am finding it more difficult to type on a computer/laptop, Fibro still seems to be turning all aspects of my life upside down, is it going to leave anything left of the original me from before i became sick?

The pain in my knees is getting worse, i have been trying to use one crutch where-ever possible so i dont become too reliant on two crutches, but on some occasions where i have to walk some distance, or where the ground is slippy or wet i am using two to help steady myself. At home i am gripping on to furniture to keep myself standing as its not really that easy to use crutches in a small flat.

Currently trying not to take to much pain killers, i am on Tramadol for my head and my knees but i only take it if i have to which is at night time to stop the pain long enough to sleep. During the day i try and put up with the pain as much as i can or take Tramadol only if i am on the verge of crying from the pain. I am also occasionally using a TENS machine for my knees but that seems to only help if the pain is mild to medium.

I was refused Disability Living Allowance but we applied in January before i got so ill that i had to use crutches to walk so we may leave it alittle while and try applying again.

In December we were looking at buying a flat but it fell through as i was sick, i am glad this happened now as the flat was the third floor up and there is no way i would have been able to navigate three/four odd flights of stairs and probally would have ended up a prisoner in my own home, thank goodness we live in a ground floor flat.

My memory is slowly getting worse, i am struggling at remembering anything short term, i am also struggling to do anything that needs me to concentrate, which takes away from me more things that i used to love doing, i cant play complicated computer games, crosswords, or even sudoku which i used to love doing so much : (

I try hard not to get depressed the only thought that keeps me going is that there are people out there much worse off than me and goodness knows how they cope and keep brave faces.

The pain in my head seems to be getting a little better, well i say it is getting a little better, it could be that or just the fact i am getting more used to it, i am now on 100mg of Topiramate and 175mg of Amitriptyline, i spoke to my gp on the 3rd of March and shes still unwilling to lower the dosage of Amitriptyline so i can try and help myself lose some weight. Even now on a diet i am not losing anything as the Amitriptyline stops weight loss and makes you put it on, more punishment!

My uncle is in my prayers at the moment he is very sick and in hospital
http://www.lifewithdialysis.blogspot.com/

Febuary

The pain in my head is starting to get a little better it is still there but is somewhat less sharp than what it was, it seems the Topiramate might be working alittle. After many months with the constant pain in my head its nice to get a little relief even if its only a tiny amount.

My knees are getting worse and worse, as are my other joints. My knees hurt the most though, at night time i have problems sleeping because of the pain i often have to take 100mg of Tramadol to knock me out to get some sleep. They also hurt alot when i am sitting down and also when i am walking. Whatever i seem to do they hurt : - ( We have had some discussion with the Fibromyalgia Association and a few other people and i am trying to take some vitamin type tablets to see if they help, i am also on special crutches at the moment to try and take some of the pressure off of my knees. Also trying to sleep with my knees on pillows at night time to see if that helps at all. The crutches are special as they have alot of support for the wrists as i dont have much grip in my hands because of the fibro. Overall i am pretty fed up.

I have a new laptop after my last one broke, i bought one with big keys on the keyboard so that i can type a little easier as my fingers are being effected alot to, also it has a big screen cause my vision has been somewhat blurry since i started getting ill.

On a good note, i have been granted Incapacity Benefit and they have backdated it to December which is good so at least some money is coming in, hopefully that will mean that maybe Simon can do maybe one less shift a week and i can see him a little more, hes been working about 45 hours or so a week to make ends meet.

I havent heard back about the Disability Living Allowance Benefit yet but i have a meeting on the 29^th so will see how that goes.

I am hoping that the crutches will make me a little more mobile around the house i got them on the 19^th but before that i tried to remain in bed as i was very fatigued and i kept falling over cause of my knees hurting so much. I am still sleeping alot, i am hoping that my GP will lower down the Amitriptyline i am on and it will make me less sleepy and make me lose some weight, its not a very good medication to be on from that point of view.

Got another Fibro Association Meeting in a few days, also before my laptop died i was trying to help out on the Fibro website doing some basic HTML etc, sitting/laying at home does get very tiresome, especially when you cant go outside in the daytime cause you are sensative to the light/sound.