Surprise!

Apologies if this is incoherent. My brain has tried its best.

There is an ever increasing list of symptoms and ‘happenings’ that come with having this condition. I admit I had no idea what was in store for me. After all people with M.E. were just more tired than the rest of us weren’t they?

My M.E. is still symptomatic apparently. I still suffer with the same symptoms I had at the beginning in 2010. The list is ridiculous. My original symptom list, that my neurologist asked to see, covered at least 3 sides of A4 paper. Some are byproducts of being ill for so long and not necessarily a symptom of M.E, but all of them are far from lovely. It was a huge shock when I started losing my hair last year. Not in fistfuls but in small clumps. I was told it was just my body’s reaction to being so out of sorts for so long. Luckily that has stopped now and I never had any obvious bald spots.

Problems with circulation can be common for loads of people but it wasn’t something I’d experienced before. Now I often have two purple (cold) toes and three red ones (boiling hot) on the same foot. My hands and feet often ‘go’ and I am left with swollen, bright red hands that feel extremely tight, and burning cold feet. This happens most days, usually in the evenings. Feeling as if my blood is running cold or that my veins are full of poison are regular occurrences too.

As a healthy person, my energy levels could be improved by having a bar of chocolate, for example. As a sufferer of M.E. this is no longer the case. My energy levels are not noticeably improved by eating and I steer clear of sugar boots or energy drinks as they make me feel very peculiar. It seems to trigger a release of adrenaline which is my worst nightmare. I am left feeling wired and more zapped of energy than before. Adrenaline seems to attack my body instead of help it. (It’s hard to explain sorry, but adrenaline has become the baddy!) Boosting our sugar levels will not give us a burst of energy like it once did when we were healthy. This condition seems to be the exception to the every rule.

My body sometimes reacts to eating meals. I am in the process of dissecting whether it is a certain food type that triggers this. I have cut out gluten and lactose which is helping stop the stomach pain I get, but the ‘crashes’ after eating are still occurring. My extended family had to witness this for the first time the other day. I never wanted them to have to see me like that as I imagine its very upsetting and unsettling. They usually only see me at my ‘best’ but as we were all staying together for a few days it couldn’t be helped. These crashes are just a normal part of my life now. How to describe a crash? Losing control of my body temperature, becoming temporarily paralysed (yes really), dizzy, faint, nausea, cold sweats, tremors, extremely weak legs, incredibly slurred speech if/when I’m able to speak, involuntary tears, not able to get my words out correctly or form a proper sentence…

M.E has affected my heart too. This is very common. Two years down the line and I can still be scared of the palpitations and seemingly irregular heartbeat. My breathing is involuntarily affected too. Now that I am used to them though, I do not panic like I once would have. I have become very good at staying calm. I seem to take it all in my stride most of the time. These symptoms are the norm for me now.

An itchiness under the skin is another symptom that I would never have associated with an illness where sufferers are ‘just tired’. The worst is when it happens under my scalp. This is usually how I can tell if I’ve overdone it. I get the itchy feeling (like insects crawling around under your skin) all over my body but these days I notice it most on my brain. When this happens it is definitely time for ‘purple time!’

Those of you who have seen me over the past couple of years will know that I now walk at snails pace! I am getting speedier as time goes on but it may become time before I’m back to my best. Recently I have started to take Mr Walking Stick with me if I’m out of the house. I can now coordinate myself to use it properly. Hooray! If anything it is stopping strangers from becoming impatient if they happen to be walking behind me. Using it also stops people from assuming I am a young, fit and healthy woman who should be giving up her seat for those who really need it…

Despite all this, and so much more, I’m not unhappy. Not at all! This illness has become my norm and I have been able to accept it and make changes to fit the state of my health. I have the support of my family and my friends, both new and old and I am happy ‘in myself’ as they say. To sit and ask ‘why me?’ isn’t something I have spent much time doing. It’s not in my nature and I’m thankful for that and so much more. Of course having this illness is far from okay, but it is what it is and I have to get on with it.

This blog is merely to help people understand the condition a little bit better. It is soul destroying to suffer with an illness that is so misunderstood by the doctors and medical professionals who should be helping us to get better. Being told it’s time to pull oneself together and get better so that ones family can get on with their lives is not something you wish to hear from your GP. If I could make myself better any faster I would have by now. Who on earth would choose to prolong this state of ill health?! If I had any other illness, would we be treated in the same way?

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