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Me & my ME/CFS.................


26th February
Feeling pretty dam awful at the moment, between my ME flaring up & down, side effects from tablets & the stress of everything else I'm just tattered.

DLA have sent me a novel amount of paper for my appeal against their decision. My head's really not up for paperwork & forms at the moment.
Good news I have also received my MRI appointment. Its on 10th March so just over a week to go. They are doing MRI-Brain, MRI-cervical spine & MRI- brachial plexus. It says each place takes about 30 mins so I'm guessing that means mine will be rounghly 1hr & half then?
You can take a cd to listen to so I think I'll have to go rummage for one so I dont forget!!

Thank you to those of you who give me such encouraging comments you remind what I am fighting for & I appreciate your support.
The anit depressants seem to be dropping off on the side effects but not sure if they are really helping, maybe too soon to tell. I am also still taking the smitryptyline which majority of the time help me sleep & keep the headaches at bay. I'm guessing the appt in May for hospital must be for the head ache clinic service where they do physio etc to help instead of tablets. Looking forward to that.

I am really looking forward to Monday when I have my 5 minutes of fame!!

10th February
I decided I would appeal against the DLA decision. I have sent them a letter which my Doctor read first. The letter (which I have decided to add below) kinda started out ok then all my feelings just came splurting out like verbal diarrhea!! I took it to my doc to read 1. so he knows what I have written as he is backing me up with it & 2. so he knows exactly how I feel as I find it very hard to say how I feel, but for some reason it comes out easier when writing.

After reading the letter my doc was obviously quite concerned about me & we had a little chat & he's referring me onto a ME/CFS counselling type course at bootham hospital & given me anti depressants..........then yesterday morning I had a funny do where I thought I'd fainted but my body was shaking & it took me a while to come round, so hubby thought it might be a seizure so back to the docs I went this morning. Doc confirmed it was a really bad/deep fainting spell from a mixture of the side effects from new tablets joined with my other tablets, my headaches, low blood pressure & my neck problems!! So now I'm on bed rest for a couple days while I let my body get use to the new tablets. It takes about 3-4 weeks for the tablets to actually work, so we'll see if the side effects go or stay!!

Here's the DLA letter: It is very personal but I feel I need to show it as it helps people know exactly what it is like to live with ME/CFS. Just reading this letter out to my mum made me cry my heart out. Please do not feel sorry for me just take in what it says & hopefully it will help you understand a little better?

Dear whom it may concern,

I would like to appeal against your decision to end my Disability Living Allowance letter dated 14th January.

I think your decision is wrong because:

You have said although my needs vary I can walk Slowly & in an adequate manner—this is true in good hours & odd days but what about all the bad days which I feel you haven't taken into account. They can come out of nowhere & last for days or weeks at a time. I am very limited in everything that I do or would like to do as it can quite easily make me bed bound. On bad days I am unable to even take myself to the toilet & require someone with me or my husband to take time off work to be with me.

My needs vary day to day even hour to hour as I can feel quite good & then crash & not be able to move. I can not predict when I will have a good day/hours or a bad day/hours so I have to take each day/hour as it comes.

Since Aug/Sep 2009 I have been suffering with severe headaches. They are so bad I just curl up on the bed & cry for hours. I cannot sleep & they make me feel sick. I am currently taking 30mg of amitriptyline every night to help with the headaches & my neck pains. I saw the headache clinic Dr Duffy on 1st February & although he feels my headaches are nothing “sinister” he is sending me for a scan to look at my head & neck because while he was examining me he asked me to hold my arms out which made me feel nauseous & like I was going to pass out. He is also referring me to the headache clinic to try Physiotherapy & acupuncture as alternative treatments to tablets. The amitriptyline are helping me to sleep & keeping my headaches in check so far as they aren’t all day every day now. I am just getting random severe headaches lasting approx a day.

I have been suffering with neck pain for many years & I have seen the doctor on many occasions about it, tried different pain medication & seen a physiotherapist who referred me to a surgeon to see if the passing out & nausea is caused by thorassic outlet syndrome, The surgeon decided it was not thorassic outlet syndrome & so I am now carrying on with the neck pain, passing out & nausea when I lift my arms to shoulder height or higher & especially if I am carrying something.

This leads me to your letter stating I can carry & lift safely. Even carrying a mug on a bad day will lead to me passing out & feeling sick. Even on good days I cannot hold my arms up at shoulder height which has been witnessed by Dr Duffy & the physiotherapist at Acomb surgery who I saw for 12 weeks & all it did was make my neck worse. She was baffled by me. Most doctors are as they don’t seem to know what is causing my neck & shoulders to do this.

I believe my muscle pains which are not only in my neck but, arms, back & legs too are Fybromyalgia. I feel like I have constant pulled muscles accompanied by joint pain which causes me a lot of disturbed sleep even with the amitriptyline.

I would say 80-90% of my time I am stuck to either being on the sofa or in bed so when “others” see me these are my few rare good days or hours.

As an onlooker people only ever see me when I am feeling “well” enough to walk slowly & adequately & feel I have enough energy to be social. These people then usually assume that I am like this all day every day, what they don’t see is how I am after the fact. I don’t see friends or family for weeks at a time as I am not up to visiting or having visitors. I feel very lonely & isolated as it is so hard for people to understand how I feel. When I do see friends or family it is usually to help me with something when my husband is not available.

Having ME/CFS makes me feel very low & depressed & now with the headaches our living situation & your letter to say I am no longer entitled to DLA I am feeling at my lowest & suffering with panic attacks throughout the day & night. The amitriptyline are helping with the night panic attacks now I have upped the dosage to 30mg from20mg but I am still getting them on & off all day every day with the slightest little thing.

To be totally honest if things get any worse I could quite happily walk out in front of a bus (when I can walk!). All I seem to do is cry, have headache & panic. I am a 29 year old who would much rather be a healthy working mum who can go out with her friends. NOT what I am which is a 29 year old who feels 99, broken up, can’t have children with

out the aid of IVF, most days can barely get up to wash herself & no longer has any pride in how she looks.

If honesty is what you need then I feel the world would be much better without me. I wouldn't have to keep fighting people like you for things I truly believe I deserve. I wouldn’t have to keep bugging my doctor every other week. My husband would haven’t to watch & listen to me crumbling away before him & I would no longer have to try & explain & re explain myself to friends, family, benefits or anyone else who just doesn't understand me.

I HATE feeling like I do & I HATE not being able to work or spend “proper” time with my husband. I so desperately want to become a mother but I can not even look after myself & from your letter I’m not getting any help so how could I have a baby? Would you want to be alive if you felt like me?

I have heard on a film recently “ I don’t just want to survive I want to live” this is exactly how I feel. Except most days I’m barely surviving. I am trying my hardest not to give in as I am terrified if I do I will end up bedbound completely or worse hospitalised, yet there is not much keeping my head up at the moment.

I could go on & on as ME/CFS is never ending like my suffering.

If you feel you need to back this up I urge to you to contact my Doctor.

24th January
Not feeling very good today. Not been great since Tuesday to be honest. The DLA letter has knocked me for 6 as I am now worrying about money & our future. I've had constant panic attacks & going to see the docs tomorrow. I understand the rules have changed but what they don't think about when they send these letters is the stress it can cause which has a massive knock on effect to ME. My mouth is full of ulcers, I'm not sleeping, I had a major stomach "do" last night & today my throat is tight & my voice has gone. Time for a treat....rolo cookie!!

19th January
When will this rain of sh*t stop falling on us? Hubby & I have had enough problems & now because of the changes "Labour" has made to benefits I am no longer entitled to DLA. Some people may wonder how I got that in the first place but I can assure you it was awarded on good merit.
Needless to say things are going to have to be cut back drastically as the lack of money is going to be tough.
As for the 1st day of detox, well it went well. I managed just over 4 pints of water (which for me is very very good) & soup. So probably about 5 or 6 pints of fluids yesterday. Today however I have had to stop the detox & move straight onto the Candida diet because our pipes are frozen..(yet again!) & I feel pretty crap so needed some "Helen" friendly breakfast so I can think straight. I have a lot to sort out & not a lot of time to do it.

January 18th 2010-1ST POST
CFS/ME is a disorder characterized by severe debilitating fatigue, recurrent flu-like symptoms, muscle pain, and neurocognitive dysfunction such as difficulties with memory, concentration, comprehension, recall, calculation and expression. A sleep disorder is not uncommon.

• All of these symptoms are aggravated by even minimal physical exertion or emotional stress, and relapses may occur spontaneously.

I'm sure most of you know by now that I suffer with ME/CFS & that I cannot work due the effect it has on me.
Before I did my whoopsie of deleting my blogs I had a seperate blog just to talk about my ME called Me and M.E. against the world.
I have decided instead of doing this again I will have a post on here which I will update as regular as I can.
All my ME stuff will be in the left hand sidebar & all my craft stuff on the right hand sidebar. Hence the change to 3 columns.

The reason I have done this is
  1. It makes it easier on me
  2. My ME & crafting are very much linked. Without my crafting I would have no reason to get up & motivate myself (which could lead to being bed ridden)
  3. I hope to educate & inform (all those who are interested) on what it is like to have ME.
I won't be doing posts every day & filling my blog. I will keep updating this post & leaving a link on the left side bar to the latest up dates. So you have a choice of reading it. I may however stick a new post in now & then.

So todays post......18th January......Day 1 of my detox diet.
Last year I started a health diet to try & help reduce/eliminate some of my ME symptoms. I did this for a good 6 months & then kinda fell of the band wagon at my birthday & then Christmas. One of my many new years resolutions is to start it again as I know it definitley helps with my stomach problems (IBS) my sleep (irregular sleep patterns) & my lady's problems (periods & recurring thrush) & other little bits & bobs.

Today I am drinking only water & later will be having a "Healing Soup". I am aiming to drink upto 8 pints of water & depending how starving I am later a lot of soup!!
The detox/health diet is called Ph Diet by Dr Young (I will put a link to his site on the left sidebar) The detox part is what they call a "cleanse" You are suppose to have water & soup only for a week & then 6 weeks of just veg, salad & non acidic food like spelt.

After my experiences last time I will be going with the flow of my body & using the diet as a guide.


Melita said…
Hi Helen ..So sorry to read of your problems with DLA , i wouldnt give up on it though . Can you get to see some-one for help and advice like CAB or a welfare officeer , i have one at my local council who helped me . I hope you get it sorted as i also suffer with Fibromyalgia and ME/CFS , IBS and a few other things that come along with it , so i know and understand what the added stress can do to you ! There are a couple of sites on the internet that can also help with advice about benifits ..Hope you get it sorted .
hugs Melita x
Steph said…
Oh Helen, you've nearly had me in tears. You poor thing. I'm so sorry to hear of your troubles with the DLA. Worrying about all that on top of everything else will not be helping your ME. I know the sheer desperation ME makes you feel. I too suffered from panic attacks when I was at my worst and I understand the total desolation and isolation that it brings. I'm glad you're writing about it and getting it out of your system, don't bottle anything up. I really believe that acupuncture could help you, for me it was a life saver and definately cleared up my headaches. It's great that your GP is supportive too, maybe with his backing things will be re-examined. Can I say something about the diet thing? I don't want to put you off because everyone is different but I'm not convinced about the diet thing because it expends alot of energy and made me (I did the candida diet) focus alot on my ME because I was obsessing about what I could and couldn't eat. I felt like I had enough restrictions in my life without taking away another pleasure of eating and I felt more frustrated with the ME because it was imposing yet another restriction on me- in the form of a diet. I know everyone's different but it's just a thought...???
Keep believing in yourself, Helen. From the short time we've been blogging buddies, it's clear to me that you have such great courage and strength. I want you to know that you're a great person with a tremendous inner spirit. Remember that you are more than ME, you are you xxxxx

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