This is my first time ever making a blog so if your reading it then thank you and sorry for the inexperienced touch. But in my defence im really doing it for myself to learn ok.
SO with that out of the way i can mention that my disease has really taken over my life for the past two years or more now and it has left me depressed mostly but i do get some little breaks from my depression now and again as otherwise i would not know i was depressed at all. It's a cruel world we live in and somewhere not far from me im sure someone else is suffering a worse faith than myself.
I do suffer from many other symptoms but i have not mentioned them because im just testing if you want to know them just google ME or CFS (chronic fatigue syndrome)suffering anyway thanks again for reading good luck
I have been diagnosed with M.E./C.F.S. by a VERY competent Doctor and her also competent partner.
This is my update as i'm in a very very bad place now cause i have symptoms so bad that i cant do anything at all i tried to take a deep breath and suck it up with regards to my illness but it has had an adverse affect.
Now what i mean is, I went on a holiday and during that holiday i went swimming twice and i also kicked a ball back and forth with my children the other thing was that i drove down and back to kerry it's a four hour drive at best, And this has left me so symptomatic that i would never do it again unless i am 100% sure i've been cured.
I am feeling so sad and let down by my own body that i cant even enjoy some activity with my children and the worse part of it all is that i have been told that i'm not disabled by a doctor(who works for the state dismissing genuine dissabillity cases) She never asked my symptoms or anything that i felt, It was a total farce so i have appealed the decision against me and i recieved a letter this morning stating that an executive officer has been asked by the chief of appeals officer to acknowledge reciept of my notice of appeal against the disallowance of my disabillity allowance claim.
So now i will be assesed again and im going to do my best but i will post exactly what has happened and im really apprehensive about this whole procedure because the last time was a pure waste of time altogether for all involved SORRY i take that back the examiner got paid as did the nurse sitting in the corner, Their time wasn't wasted at all they do this for a living and get paid very well to refuse genuine applications and make it hard for all involved.
Also i recieved on the letter at the end a part stating i could claim the expenses to and from the examiners address but i can not claim taxi fair even though it is there and is claimable for some people? Anyway i can't take the bus as i get very dizzy and weak also if i have to walk to the bus stop and then to the exam building i pay for that with days of exuastion and bed rest I DO NOT THINK THATS FAIR DO YOU ??? well that is it for me at the moment so ill let you know what has happened on the examination every little detail.
Since the holiday i have got so bad so quick to the point that i cant stay awake and my body is continously exausted and i'm in pain throughout my whole body, I also suffer from depression as a result of the effects of M.E. i get tunnel vision and migraine headaches All the joints in my legs and arms ache so bad it can bring tears to my eyes, i get sweats very bad while just sitting there and sometimes i take a huge deep breath like a gasping breath for absolutely no reason and that instantly takes any energy i've got and drains it, i suppose it's like a sped up panic attack or something like that? Anyway i feel helpless all the time im sick of being sick.
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Hello and welcome to the blogging world. I found your blog on my Google alerts and thought as you were from Ireland I would visit.
ReplyDeleteI live in UK and was diagnosed with ME/CFS but eventually by chance GP suspected Lyme Disease and now after months of antibiotics I am nearly 100% recovered.
I am in touch with several people in Ireland through Eurolyme who have lyme Disease. Lyme Disease is an infection Borrelia which is passed on by the bite of an infected tick but as the smallest is so tiny we are not always aware of being bitten.
There is much information about linking many ME/CFS sufferers to Lyme so if you haven't already it is well worth looking into.
If you look at my blog on the top right you will find many links into research and information about this illness. The bottom of the list is well worth looking at for ME/CFS sufferers.
I hope you find that interesting. Clicking on my name should take you straight to my blog.
Good luck with finding something that helps you cure your ME/CFS.
Sorry to hear of your and your family's situation. I hope things improve for you all.
ReplyDeleteHave you contacted or joined either of the two national ME groups in Ireland, the Irish ME/CFS Association - for Information, Support & Research (Irish ME/CFS Association for short) and the Irish ME Trust. The websites are: http://www.dublin.ie/websites/irishmecfsassociation/ and http://www.imet.ie
The Irish ME/CFS Association does not have a very big website but is active in other ways. For example, it produces a quarterly newsletter filled with information from Ireland and other countries. People who contact get a free information pack which includes the first name and numbers of some patients who are willing to talk with others. If people join, they get a more detailed telephone network list where some members describe themselves so people can look out for people who may be similar to them in some way apart from having ME/CFS. To get a free info pack, the contact details are info@irishmecfs.org or ring the answering machine on 01-2350965. It's an all-volunteer organisation and I help run it.
Best of luck in the future.
P.S. Little tip: It's easier to read documents if there are gaps between the paragraphs. You might lose a few readers if you don't do this.
Sorry to hear that you are having extra difficulties.
ReplyDeleteI think you may be able to get money back if you use a taxi (and keep the receipt) for a disability assessment. Make sure to contact them in advance to find out the situation. Your Citizen's Information Centre should be able to give you advice on your entitlements.
Also it's important to plan for these assessments i.e. think about why you can't work, etc. They're not easy for people with ME (e.g. people usually don't have abnormal test results) but I know lots and lots of people who have got disability payments.
Unfortunately often the first doctor does turn people down - I think they hope that some people will give up then.
Thank you all for your comments on my blog i really appreciate it and your advice will lead me to post better and also join the Irish ME/CFS Association asap.
ReplyDeleteTKno2 thank you very much i really appreciate it.
joanne-orangecottages thank you very much for your input and i will ask to be tested for limes disease just to rule it out.
sorry to hear about your struggles. I have had similar experiences, including some outrageous state benefits assessments. I have recently started a blog myself so to compare notes have a look. Its www.meunemployable.blogspot.com
ReplyDeleteIf its ok with you I will put a link to yours on my blog