I am a person who believes that everything happens for a reason. I have to with everything that has happened to me. If I didn’t then the universe is just cruel and unfair and what’s the point in struggling against the tide? But in stead of hopelessness, I chose to believe that, although I may not know why, and may never know why, the things that occur in my life have to happen in order for some other event to happen that creates balance in the universe. This belief brings me peace of mind and allows me to carry on trying when everything is telling me to give up.
5 years ago I went back to college to do an Access course so I could go to University. Halfway through my college course I got a very severe flu-like illness and never fully recovered. I got M.E. I was still able to complete my course (just about), but was unable to get the work experience required for the University course that I wanted to do. I was rejected from all four of my University choices and left pretty distraught. I was on the verge of giving up when my favourite University offered me a place on a different course. It wasn’t what I wanted to do, but it was close and it could lead me to what I wanted to do, so I accepted and went to University.
1 year of that course and my health had deteriorated to the point where I was almost completely bedbound. I was still managing to get the work done (and was getting good grades) but my tyrannical course leader said that if I didn’t show up for class then I would be kicked off of the course. If I was kicked off of the course then I would be kicked out of my campus accommodation, making me homeless. I somehow managed to get a meeting with the leader of another course who said he’d be delighted to take me on. I ended up loving that course and that department and they supported me with my illness so I was able to graduate this year with excellent grades.
If I had been accepted onto the course that I originally wanted to do then I wouldn’t have wasted a year on a terrible course and I would have graduated last year and been in work this year when the virus hit. And what was that course that I wanted to do? Child nursing. Yep, if I hadn’t gotten M.E, I would currently be a Nurse in the NHS right now.
Just saying… everything happens for a reason.
To listen to me read this blog post, please click here: Reading “Trading Places”
My partner is ill. He has shingles. He has been describing to me the kind of pain he’s been feeling, a sensitivity on the skin and shooting pains like electrical shocks through him. Everything he talks about is very familiar to me. It’s the kind of pain that I get in my legs when I’ve over-exerted myself, or I’m in a flare, or sometimes if I’ve just been wearing tight trousers or leggings all day. I told him, “That’s what I feel when my legs get twitchy.” I call it that because the ‘electric shocks’ make the muscles spasm, and my legs literally jump and twitch, sometimes even while I’m sleeping. Again, this is something he is experiencing and also describes the muscle ache that feels like you’ve been working out.
As much as I hate seeing him in pain and I want him to feel better, I feel a strange kind of validation that he now knows my pain. From this point on, when my legs start to twitch he’ll have a better, fuller understanding of what I’m feeling. He’s always been sympathetic and caring and understanding, so it’s not like this new knowing will change his behaviour towards me, but I will feel more understood all the same. Like trying to explain colours to a colour blind person. They might sort of understand what you’re getting at but they can’t know what those colours really look like without seeing them.
It’s also a strange experience being on the other side of this dynamic. Seeing his pain and understanding what it feels like. Knowing that there is nothing I can do to help. Appreciating for the first time what it’s like to see the person you love in pain and being unable to do anything about it. I wish that I could take it from him since I have more experience with this kind of pain.
In a way, it feels personal, like it’s my pain. Like the universe accidentally gave it to the wrong person and I want to be able to say “Oops, that was meant for me” and take it from him. But of course, I can’t. I just have to watch and wait and remind him to take his pills and bring him cups of tea.
I guess every now and again, a little role reversal is useful in a relationship. Being able to view a situation from the other persons perspective gives you a kind of empathy that you can’t get any other way. It might not change the way you behave but I believe that sharing that experience increases the bond between you. Therefore, as much as I hate that this is happening to him, I’m also really glad. I just hope it’s over soon.
Today I am having a flare up. This happens to me when I try to use more spoons than I have, or if I regularly deplete my spoons without having a rest day to replenish the stocks. Usually, I would have one rest day a week, sometimes two if I use up all my spoons in a day, or more if I do this continually. At present, I have gone 2 and a half weeks, using up all of my spoons every day without taking a rest day.
For those of you who have no idea what I am talking about, Spoon Theory is a commonly used method of explaining what it is like to live with a fatigue inducing chronic illness, where spoons represent units of energy. Here is a brief video that explains it (not mine, borrowed from NewLifeOutlook on Youtube) but there is loads of information about this online if you’d like to look into it further.
For me, a flare up consists primarily of pain. It’s not all that painful but is simultaneously unbearable. The only way I can think to describe it is like a toothache all over my body. I’m also shivering a lot. Not because I’m cold but because my autonomic nervous system is panicking right now at how much pain I’m in. My senses are hypersensitive so I have to keep noise volumes as low as possible and keep the curtains closed, even food smells could set off a migraine. My ability to stand is limited to 3 minutes before I either sit down or collapse to the floor, whichever comes first. My only job for the day is to rest and recover as many spoons as possible. But this becomes problematic when standing, sitting and lying down are all painful, or when I’m unable to cook myself food or get myself anything to drink, and when sleep is nearly impossible.
So all I can do is take as many Ibuprofen as possible (without overdosing) cry, and hope for the best.
…the strength to change the things I can, and the Wisdom to know the difference.
I am back at Uni for my second first year. My first first year was failed because looking after myself became more important than passing a course I didn’t enjoy doing anyway. I have been housed in a handicap accessible flat with a seat in the shower, hand rails, and a lowered hob and sink in the kitchen. I was ecstatic to discover this as it meant that looking after myself would be so much easier than it has ever been before and I could therefore put more energy into actually studying. The flat is old though and definitely needs updating, but I’m not complaining since the benefits massively outweigh any of the insignificant issues I may have.
Today was the Freshers Fair. It’s the day when all the clubs, societies, sports groups and local businesses set up stalls to try and entice students to sign up to their thing. Last year I was dealing with anxiety levels that made crowds terrifying, but I pushed myself to go anyway because I had such lofty goals for myself and wanted to sign up to all of the things. This year I remembered how much I enjoyed it last year, but forgot to consider how much my health has declined since then. This year I had to manoeuvre through the crowds with a cane. This year I found myself looking at stalls and thinking how much I’d love to do that but, knowing that I am not capable, having to walk on by. Every stall I passed made me slightly more depressed. I can’t even take part in medical research because they need “young, healthy specimens”. I went to the library to distract myself away from crying, because at least I can still read… for short periods of time at certain times of the day assuming I’m not being badly effected by ‘brain fog’. I went back afterwards to sign up for the things I had previously decided I was going to do. I joined the Biology Society to facilitate my learning (I’m studying biology), The Pagan Society for religious support (I’m a Wiccan), The Sustainability Society so that some days I may be able to work on the allotment and the Sign Language Society since I’ve always wanted to learn but never had the opportunity to do so.
I compare my past self to my current self more often than I’d like to. It depresses me because even though I know I have to accept my limitations, there is always a part of me that resents acceptance and equates it to weakness. This is particularly annoying because when I think of my current self without the comparison, acceptance comes naturally and I am excited by things like living in a specially adapted home.
So here is the daily challenge to my mental health; accepting the change that brought about my limitations and learning to live within them, identifying the things that I am still able to do and pursuing them while disregarding the voice that tells me I’m useless, and learning how to differentiate between the two effectively.
I am a writer. Not professionally or anything, but it’s my preferred medium of self-expression and creative outlet. So, once I’d come to terms with the fact that I was living with a chronic illness, it seemed obvious that I should write about it. I went back and forth on the idea of blogging about my experience. There are pro’s and con’s to any balanced argument, but the thing that held me back the most was the feeling of lacking the authority to talk about this illness publicly. Let me explain:
Myalgic Encephalomyelitis does not have a definitive diagnostic test, it is a diagnosis of exclusion. It takes a long time and a huge number of tests to rule out what it isn’t before doctors will come to the conclusion that it’s probably that. Therefore I cannot say definitively that this is the illness that I have. Also the list of symptoms that are associated with M.E may not all be present and can also overlap with other illnesses (Fibromyalgia, Lupus, Lyme Disease etc.), and these illnesses may also lack a diagnostic test or they may have an inaccurate test that gives off a number of false negatives. To add to the confusion, some people may have more than one of these illnesses at a time or may have an obscure or rare manifestation of the illness(es).
Secondly, M.E effects every individual differently, firstly in which symptoms a sufferer may or may not exhibit, and also in the severity of their symptoms. It should also be noted that severity of symptoms can increase or decrease from day to day depending on a wide number of variables. The severity of the illness can also be changed over time through medications, therapies and lifestyle changes. The M.E Association has a Disability Rating Scale which briefly outlines the capabilities of sufferers at different levels of symptom severity. I would consider myself to be in the ‘moderate to mildly affected’ section of this scale, being at 20-30% disabled. On a bad day, or if I’ve had several bad days in a row, I could be considered to be up to 60% disabled, but only on extremely rare occasions have I been worse off than that.
To consolidate and sum up, reason number one for my lack of authority on this subject; I don’t know for sure that M.E is even the illness that I have. Reason number two; I am a ‘mild to moderate’ sufferer, meaning that I don’t know what it’s like to be really disabled by this illness.
But as you see, here I am starting this blog about being an M.E sufferer. So I must have reconciled these arguments against such a thing. This is how I intend to over come these issues; with a disclaimer. This blog shall be a sharing of personal experience living with a chronic illness that, for the sake of understanding and categorisation, I shall refer to as Myalgic Encephalomyelitis (or M.E). I am not a professional on this illness and therefore nothing I say should be taken as medical knowledge or advice (unless followed up by a source, in which case it’s your responsibility to follow up and decide whether or not that source is reliable).
Now I am free to share my experiences, opinions, stories and emotional journey without feeling the responsibility of being an authority on all things M.E. Now I can breathe, relax and write with ease. I hope I can be a source of entertainment, comfort and/or comradeship for everyone that reads my words.