Saturday, 16 February 2013

An Introduction

This is my first ever blog post so I thought I'd introduce myself and the purpose behind this blog.

So first the purpose:

I have been struggling with my illness recently and wanted a space to vent about it without unloading directly onto individual friends and family and stressing them out. This way if you want to know how things are going, you can come on here and see rather than me constantly whining at you. This isn't going to be all downhearted (I hope!), it will also be about my general thoughts about things, cute/inspiring/motivational things I come across and of course will be positive when things are going better. I will warn you now that it will, however, probably all be chronic-illness focused. I may mention things about my life, but it's important to me that this blog does not identify me if certain people go looking on the internet for more information about me, therefore I would appreciate if friends and family don't include my full name or anything identifying in any comments on here- thanks! If other CFS sufferers find this blog and it helps them feel less alone then that's great too :)

Secondly, about me (and my M.E.):

I'm 21, have been ill for about 3 and a half years now and was diagnosed almost 3 years ago with 'Chronic Fatigue Syndrome' (also known as M.E.- Myalgic Encephalomyelitis). I also have asthma, but this is fairly well controlled now most of the time. To give you some idea, my current CFS symptoms include:
  • fatigue (very different from normal-person-tiredness)
  • pain (nerve, muscle and joint- nerve pain in my face and legs is particularly severe)
  • weakness (reduced grip strength, leg weakness causes difficulty walking)
  • muscle tightness on exertion (leading to muscle and tendon injuries from walking too far)
  • changes in sensation (numb fingertips, fizzing/tingling feeling in my legs and face etc.)
  • nausea (sometimes barely able to eat for days as a result)
  • speech problems (difficulty finding words, get stuck on sounds)
  • balance problems (particularly in crowds)
  • difficulty being upright during relapses (can become impossible to sit up for long without feeling dizzy/passing out)
  • difficulty recovering from infections (they often cause relapses in my CFS)
These symptoms get worse following activity (a phenomenon that is believed to be particularly indicative of ME/CFS, known as Post-Exertional Malaise)- this response is often delayed causing 'payback' and difficulty judging what you are truly capable of, as opposed to what you are just optimistically hoping you are. The severity of symptoms on any day is unpredictable and the fact they simply never stop is difficult.
Despite my CFS I am continuing with my education, and am trying to retain something that vaguely resembles a social life. I try to stay positive, although some days that's harder than others, and believe that each day may not be better, but it is always one day closer to recovery.


..I think that'll do for blog post number 1! I'm not quite sure what I'm doing with Blogger, so bear with me while I work it out.. and do feel free to post questions or ideas for blog posts etc in the comments (anonymously if you wish). Thanks!

7 comments:

  1. Hi Jess! Congratulations on your blog. I am also an ME'er and decided to write an ME/CFS specific blog. Like you, I'm still finding my feet, but it looks like you're off to a great start! I look forward to reading more from you.

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  2. Hi Jess! I've been ill since 2005 and I finally had a diagnosis of CFS last year. I'm now following your Blog as it's great to have someone to relate to. The is a page about my journey on my Blog. Nice to 'meet' you :)

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  3. Hi Jess, I'm a 19 year old student from the UK and was diagnosed today with CFS/M.E after roughly 5 years of symptoms and illness. I've found your blog really helpful and was interested to see how you're coping with continuing your studies whilst living with a chronic illness? I've just finished my first year of university, and am having serious doubts about whether I'll be able to go back. My first year was a lot of fun, I met some amazing friends and have loved my experience so far, but I was unable to attend most of my lectures and seminars, was called into meetings about my excessive absences and spent a lot of time in bed as a result of my illness. I'd be so upset if I had to quit uni because of this as I really enjoy it and would hate to leave because of something that is beyond my control, but it's a lot of money to pay when I can't go into university because I can't get out of bed. Although the uni has offered support now that I've been diagnosed, I get considerably worse when I"m there as I'm away from home and have to do my food shopping, cook, clean and do all my washing as well as keep on top of exams and assignments without help from my family, which takes a serious strain on my health. If you have any advice on how you cope with being a student, I'd be really grateful! Thank you! x

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    1. Hi, I have done a post for you here with the basics: http://jesscfs.blogspot.com/2013/06/tackling-uni-with-chronic-illness.html
      Huge hugs to you- I don't know whether you were expecting a CFS/ME diagnosis or not, but either way it must be a bit of shock, although probably a relief, to have a diagnosis after all that time!! I'd be more than happy to exchange some e-mails with you if you would like- if you put a comment with just your e-mail address I won't moderate it through but will send you an e-mail :) It would be nice to chat to you X

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  4. I just read your post, thank you so much for taking the time to do that! I was expecting a comment back, but to see you'd made the effort to do a whole blog post was really kind and helpful of you :) I found so much of your advice really useful and it's made me see that it is possible to continue with uni when you have CFS, as I was starting to think my only option was to leave. I was kind of expecting it as my boss randomly said to me one day "you're always getting ill, maybe you have ME or something", so I did a little research and realised I had pretty much all of the symptoms and the description was so familiar. It was definitely a relief to hear it confirmed by a doctor though :) okay sure, that would be great! I'll leave another comment after this one :) x

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    1. No worries at all, and I have e-mailed you :) x

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  5. Hi Jess, thank you for writing this blog. It's nice to feel slightly less alone with this debilitating illness. I'm fifteen and have CFS/ME. Am usually in so much muscle and limb pain that I spend my days drugged up on pain medication.

    I just want to thank you again for making me feel less alone. People can be so ignorant about CFS.

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