One day during January 2012, everything stopped. I was getting ready for work and just couldn't. I could barely move, everything was a struggle and I felt my world closing in on me.
I managed to get an emergency appointment at our medical surgery and met, for the first time, the GP that I would come to consider 'my' GP. I was immediately signed off for 3 weeks with work related stress. This was then changed to depression and I went through many different medications and many different dosage levels. I eventually found one that coincided with a stabilisation of the depression, but it then became very apparent that the physical symptoms that I was having just weren't getting better.
Symptoms like struggling to move, constant pain, aches in my joints, headaches and migraines, were coupled with a near constant feeling of having a cold I just couldn't shift. I struggled to be able to get to sleep and when I finally did, I struggled to stay asleep. Concentration was so reduced that I couldn't even read a page, never mind remember what I'd just read. My brain struggled to form sentences and organise thoughts.
Initially I was very frustrated by this and really battled the symptoms to try to walk by building up distance 10% each week (effectively self-imposed graded exercise). Eventually I lowered this percentage and when my symptoms got worse than before; I realised that this wasn't the way towards recovery. Although I realised this within a year, it's taken me a few years to really get to grips and accept that I have to pace myself, if I'm to have a reasonable quality of life.
As with most people that have been diagnosed with ME, I was tested for many things including: Lupus, Fibromyalgia, and Lyme Disease. What made it worse was that my blood tests did come back with hints that I could have Lupus, prolonging the diagnosis stage. It wasn't until around August 2014 that I met with a GP specialising in ME, who finally diagnosed me with ME.
I know that there are people in my life that don't think I have a real illness. But I can't blame them - for the first couple of years, I didn't think I did either. For the first couple of years I constantly questioned myself. I'd ask myself: Am I making this up? If I'm making this up; how would I benefit from being ill? Eventually I begun to believe myself - I was actually ill.
I've lost so many things in my life that making this up just doesn't make sense. I have no job. I went through a long period with no ESA - so have no money. The only friends I have are on the Internet. I struggle to garden, never mind walk very far. My body was always fit enough to do whatever I wanted it to, such as climbing and canoeing - but now I have come to terms with the knowledge that if I can ever do them again; it won't be any time soon.
However, having said all of this - I am so lucky. While I'm mostly house-bound, I can move around the house. My wife normally takes me out once a week - normally to visit her parents. Some people with ME are bed-bound. And while walking is painful - I can walk - some people need either wheelchairs, mobility scooters, or both.
I'm lucky that I have a great GP that has quickly made referrals that have helped me reach people that can help me. I've had specialist physio sessions to help me get some range of movement back in various points of my body. I've also had occupational health sessions to help me improve my sleep and to learn to pace myself. Now that I have a firm diagnosis, I'm having even more specialised OT sessions for ME, which I hope will give me techniques to help me not just cope with a child - but enjoy having a child.
Life is different now. I appreciate and enjoy everything that happens in my life - something that I was 'too busy' to do in my previous life. I'm looking forward to the future in a way that, prior to my illness, I never did. I still have all of the symptoms (and more) that I mentioned above, and while it makes every day things every difficult and I'm nowhere near as productive as I used to be: I'm happy. Like the saying goes "Pain is real; but suffering is a choice".
And on that note, I'll close of this post. I'm looking forward to writing about how I enjoy gardening despite the pain and tiredness.
If you've made it this far - thank you for reading. I'm hoping that this post will, in some small way, help increase awareness of the condition.
If you'd like to find out more click this link to Action for M.E.
Life can be so hard some times and seem not fair, but it looks like you are now in a good place and have a baby on the way, some people would say you are very lucky... Life needs to be lived to the full no matter what happens on the way. I wish you well and have a happy Christmas.
ReplyDeleteAmanda xx
Yes, I'm very lucky. While I miss the things I can't do anymore, like work, drive, leave the house on my own; I try not to concentrate on them. It certainly changes the way you experience life and what you appreciate. I hope you have a merry Christmas. All the best, Tim
DeleteVery interesting to read. Very awful to have. It sounds dreadful and although you put a positive spin on it I bet you'd wave goodbye to it with delight. One day, I hope you will be able to do just that. I only know about M.E. from others, not from experience, but it seems it can pass - but why is that? I look forward to learning (perhaps?) from later posts whether it's something one can fight off or something which simply has to run its course. As for diagnoses made by people who don't have M.E. and don't know what they are talking about - there are an infuriating number of conditions which are dismissed like this. I imagine it can make you feel lonely at times. Glad you have a wife who supports you and a G.P. who knows what to do.
ReplyDeleteOh! I'd arrived here originally to wish you a happy new year. All the more, having read this, do I send you best wishes for 2015.
ReplyDeleteThank you for your lovely comments. It can be very difficult not to fall into the abyss that ME (and other conditions) create. I try to be as positive as I can and while it doesn't make the tiredness and pain go away - it does mean that I can find joy in every day.
DeleteAs far as I'm aware there is no treatment that works even for the majority of sufferers and for the lucky ones that do recover; there seems to be no common reason - but I may be wrong!
I hope you have a fantastic 2015 and thank you for all the great blog posts you've shared over the past year.
This is a great post Tim. I kept nodding and muttering, yes, exactly, etc. I did the trying to push through it phase, but of course learned, as did you, that this doesn't work and just made it all worse. It takes a long time to accept the illness, and that you have an illness and aren't just making it up. As you know, you (and I) are not.
ReplyDeleteLike you, I've come to appreciate the small things in life so much more, and even just sitting in the car looking at the views as my partner drives me around the Peak District, and of course, doing some gardening, brings such joy. I consider myself lucky as I have 'moderate' ME, so not bed bound and can do some activities, just very carefully with lots of resting and mixing types of activities up.
I'm really looking forward to your future Gardening with ME posts, and to picking up some tips from you on how best to Garden with ME.
It's good to hear from you. It's also nice to know that our experiences are so similar. I do the same when I'm being driven around too (perhaps one good thing about ME is that I'm chauffeur driven everywhere!!!) - I often gaze at the verges and identify the plants growing there!
DeleteI hope my ME-related posts are even half as good as yours.
Good post Tim! Like yourself I sure with m.e. Though I seem to be in some sort of remission at the moment after 7 years some of that walking with a stick. Good luck with your recovery. Deb @ www.girlontheplot.blogspot.com xx
ReplyDeleteI'm so glad that you're in some sort of remission. Your blog looks really good - I'm going to have a good read in a mo!
DeleteHi Tim: I was so sorry to read that you are struggling with this illness. I have a relative who has it, and the description of the person's life and the prognosis are pretty similar to yours. I hope, like some of the others mentioned, that your condition will improve and that your quality of life will be better. You are brave to share your experience with others. I always enjoy visits to your blog. Blessings in the New Year!
ReplyDeleteHi, thanks for stopping by and for your blessings and wishes. I also continue to hope that the condition improves - but if not, at least I'm getting better at dealing with it over time. Happy New Year!
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