Hidden illnesses. How do you go about explaining this life changing thing you’re experiencing? How do you explain the pain, frustration and daily mental battle? If I hadn’t lost my hair, I would look ‘normal’ so people would assume I am feeling ‘normal.’ I know the feeling of tiredness that glandular fever brings and this has been so much worse with the added joy of other symptoms too. If I trace some of the symptoms back, I’ve had them for quite a while, they’ve just got increasingly worse so when the doctor diagnosed ME, I felt relieved as I knew what I was dealing with and could research what to do to help myself. There’s no test to diagnose ME, it’s more like a check list of symptoms that have lasted over a period of time and unfortunately, there’s no known cure or treatment – something that is difficult for people to understand as they want to help, they want to fix and they can’t.
ME (Myalgic Encephalomyeitis) is more commonly known as CFS (Chronic Fatigue Syndrome). However, I wanted to know what ME stood for and meant and this broke it down for me:
The chronic fatigue part is the worst. We often comment on how tired we are, I know as a teacher we do it far to often but not without good cause! I’m glad I am a teacher and that I know that ‘end of term’ or ‘Ofsted’ tired because I’ve been able to use it as a gauge. As far as I can tell, ME effects people in different ways and for varying periods of time and although it may appear to improve or even disappear, flare ups are often experienced for the rest of your life. For me, I haven’t been bed bound by it but am spending much more time in bed and sleeping than ever before and feel constantly weary. There’s a sense of constant lethargy, I wake up feeling just as tired as the night before, my sleep is often restless due to muscle pains and cramps but thankfully most nights I sleep solidly. Some days I wake with more energy which is so exciting but so deceptive as I feel I can do much more but that results in a crash either later that day or the day after. Those crashes result in my legs feeling like I’m dragging bricks around and muscle pain like I’ve run a marathon and for those of you who know me, know I’ve never run a marathon – I needed two bras to tap dance so let’s not imagine what I’d need in a running situation!!
It takes a huge amount of energy to contemplate getting up and going through the morning routine and I don’t even have hair to wash, dry or straighten and I’m not applying make up! I find that since having rheumatoid arthritis, simple jobs that I took for granted like brushing my teeth, are particularly difficult and time consuming and getting dressed is exhausting. I feel ridiculous, they are such normal jobs to do and I’ve just slept for twelve hours but it just zaps me.
I’m normally quite time efficient and waiting for others to be ready to do things, it feels strange that at the moment people are normally waiting for me. I often get frustrated with the situation, with myself and although I know I can depend on my family and friends, I also don’t want to be a pain in the backside, a negative nuisance, a misery. So, on the whole I have tried to keep positive and keep the ‘low’ moments to myself, I’m quite good at having a cry and pulling myself together – it’s not daily, I promise I’m not a closet crier but sometimes it’s better to do that and come down to a new day with a smile and just get on with it. I think it is important to reiterate again that if you need to, you can call on people i.e Christmas Day. I had to text my mum and ask her to come upstairs to console her tragically blubbering mess of a daughter because of all the days, Christmas Day I felt worse than normal. I wanted to wear either Brian or Adams but my head was uncontrollably itchy and sensitive so I’d had to listen to both my mum and Jacks girlfriend using a hairdryer and I could imagine them putting on their make up for the day and I just wanted to hide under my duvet and go back to sleep because I felt ugly and I hurt both physically and mentally and at that point I’d had enough. But, after a big cuddle and talk, it was ok and Christmas was nice – different, calmer, but nice.
Initially I found a few ME sufferers described it as having a certain amount of beans a day but the more research I’ve done, I’ve discovered the real analogy involves spoons. “Normal people” have an almost endless amount of spoons per day, sometimes needing a power nap if they are going out in the evening. However, for an ME sufferer, the analogy goes along these lines: sufferers have on average 15 spoons in a jar a day but each activity completed will use a certain amount of them. You can borrow spoons from the next day but obviously this will have a knock on effect. Different activities have different spoon values so you have to decide what you use your spoons on. You will find you need a sleep most afternoons or even after you’ve done your first daily task, but this doesn’t add spoons, it just means you have the energy to use your remaining spoons for the day. It sounded ridiculous at first but actually it’s brilliant.
I love being busy, I’ve never been good at being bored and am always doing something. Mum has commented several times that she will know when I’m feeling better as I’ll want to be out and about, doing things and probably getting on her nerves! I love my job, I love socialising and making plans with my friends and family and that for me, has been one of the hardest, most frustrating things. I’ve lost my hair but I also feel like I’ve lost myself abit. Friends have popped in or taken me for the odd meal out which has been wonderful but at the same time it’s so hard. I’m in the room, I’m there physically but I’m not. Another ‘hidden’ part of this illness is the so called brain fog. Although I’m smiling, commenting…awake, I am constantly foggy and tired and I am acutely aware that I’m not concentrating on conversations, not remembering certain things I’m told, like I’m floating above the situation. I can’t find the words I want and often say the wrong thing. This I hate. My memory has always served me well, one of the things picked up at my interview at my first school was how they’d liked the fact I had remembered several children’s names in such a short space of time but I found myself the other day trying manically to remember the names of the children in my care this year…and I couldn’t. I could not place their names, I could see their faces but I couldn’t think of their names and that upsets me greatly. I hate feeling forgetful and muddled, it’s just not me.
I have found that certain activities use up the majority of my daily spoons; I therefore need to plan and think about things before doing them. For example if I’m seeing a friend at home, that uses less spoons than going out to see them or going for a meal. Something that I have noticed is that I have become more sensitive to light and noise. I normally love having music on all the time, as soon as I get up, the radio goes on so I can sing along as I get ready but at the moment, silence is much more comfortable. Busy restaurants, rooms, even having the TV on whilst talking at the table can at times really confuse my brain and means I have to try extra hard to concentrate resulting in more spoons being used than normal. We dim the lights a lot too…. all in all I feel like a little old woman at times!
I miss doing normal things like going to work. I’ve had several comments since being off that it must be so nice to not have to set an alarm, to sleep for as long as I want and take naps every day. Believe me, it’s not. Napping and lie ins are a luxury normally, the thought of having a nice nap under a blanker is something I love to do after a long day at work, but when it becomes a necessity, the joy is taken away. I miss the hustle and bustle of school, my wonderful work colleagues and friends, the children and parents. I know I’m odd but I do love my job and I miss it and can’t wait to be back but I know I have to be careful because going back too soon could send me back twenty paces and my spoons would be long gone before break time. I miss organising and hosting things, driving to see people – normally coming home from Dubai entails me catching up with everyone, having fun, going out…that’s been hard this time, not being able to face even entering into group chats on what’s app because the barrage of messages that go with that are too much for me to comprehend. I’m normally first to have written and sent Christmas cards and bought and wrapped presents but this year I couldn’t even think about what to get people until a few weeks before and if it didn’t come from the internet or John Lewis, tough luck! I love a good shopping trip but since being home I’ve only been shopping a few times – all have stories to go with them!
- Bluewater with my friend to find hats or clips to cover my bald spots – I turned up to find her wearing a baseball cap to make me feel less conscious. Now that is true friendship, yes it made me laugh but it mainly made me so grateful to have such a thoughtful, wonderful human being as my friend! We walked round like a pair of chavs for a while until I convinced her she could take it off, she could now see how hot they made your head!
- Bromley. I was convinced and determined at this point I would be heading back to Dubai within my two week time frame so I went to stock up on toiletries. I didn’t venture out of Boots as it was hot, bright and noisy and I already felt exhausted. I got the things on my list and went to the check out, the lovely lady started scanning and then said, “love, you can go and choose another shampoo or conditioner, it’s 2 for 1.” And that was all it took, in the middle of Boots, I burst into tears. I’d automatically picked up the hair bits I’d normally buy without thinking that in a few days time I would be bald as a coot! That poor woman didn’t have a clue what was going on, I just told her to cancel all the hair products, paid and got back to my car as quickly as I could.
- Bluewater again. Our wonderful friend Cathy (who has been second mummy through all of this) offered to drive me to get some Christmas presents. At the moment the arthritis is all in my right hand side so makes driving painful and dangerous but also I can’t grip heavy items so carrying bags is impossible. She has been so understanding and kind and knew what my limits were – we would go to John Lewis only, the gift section and she would carry all my bags. We did manage a sandwich too and then she brought me home.
- Asda (!) Mum and I went, more to just take me for a drive but we went in to have a look. It was empty and quiet but she still managed to pull down a whole wall bracket full of clothes and cause a scene!
It sounds silly but just going for a drive sometimes is lovely. A change of scenery, fresh air and I can just sit and watch the world go by. It’s so hard, I’ve had to make decisions to help myself through this. I’ve made plans that I’ve had to cancel last minute because I simply do not have the spoons. It’s not because I don’t want to, believe me, I want to more than anything, but I just can’t. And I need people to understand that, to believe me because what makes you feel worse, is guilt. Guilt that you’re letting people down, that you aren’t being ‘normal Hannah,’ that you aren’t taking steps to get better, that you’re being lazy. It’s been nice to read about other people with similar stories, people who have experience of having or knowing someone with a ‘hidden illness’ because they too have had similar experiences and sadly because you can’t explain it, you have to rely on people just understanding and taking your word for how awful you feel. Tired to someone with ME is not tired to a normal person.
There’s so much more to this illness that I’m coming to learn about but I’m afraid I’m running low on spoons so…until next time.