Wednesday, 11 September 2013

Invisible Illness Awareness Week, 30 Things

1.     The illness I live with is: Chronic Fatigue Syndrome, also known as ME, commonly referred to as CFS/ME or ME/CFS. (+ associated problems that are occasionally listed as separate diagnoses..)
2.      I was diagnosed with it in: To be exact 01/03/2010, I think my appointment was at 8:30 ;)
3.      But I have had symptoms since: September (ish) 2009
4.      The biggest adjustment: not being able to give things my all. E.g. uni and my A-levels. Having to accept that my illness means that my best just isn’t going to happen right now, and that pushing myself will only make matters worse.
5.      Most people assume: That would probably be best answered by them. Before my scooter they probably thought I was pretty healthy, now they probably just think I get a bit tired and have some problems with my legs maybe. I don’t know.
6.      The hardest part about mornings are: waking up still feeling unwell, feeling unbelievably nauseous to the point where I can’t eat for several hours after I get up, still feeling almost as exhausted as I did when I went to bed the night before, trying to get my brain to function to some sort of extent to try and get me up and ready in a logical order, knowing that I have a lot of hours of pain and exhaustion ahead.
7.      My Symptoms: fatigue; headaches; muscle/joint/nerve pain; nausea; dizziness; strange cognitive problems at times; muscle weakness; post-exertional malaise (feeling ill after doing anything); loss of balance; sleep reversal/ strange combination of hypersomnia and insomnia; palpitations; breathing problems; cough (now only rarely- big yayy!); difficulty walking; facial pain; severe abdominal pain; randomly feeling very full; abdominal distention; slight unilateral foot drop; hypersensitivity to light; hypersensitivity to touch.. etc.
8.      A gadget I couldn’t live without is: my mobile phone. I use it to skype from to keep in regular contact with my parents. I check my e-mails, my facebook. I listen to music. Take photos. It’s my security when I’m out on my own because I know I can always ring for help if I’m taken ill or have a problem with my scooter. It is my connection with the outside world when I’m ill in bed for days. It’s light enough that I can manage it even when I’m unwell and can watch TV programmes on it when I’m stuck in bed but able to tolerate sound and light.
9.       The hardest part about nights are: lying awake in pain, feeling utterly exhausted but unable to sleep; knowing that most people are fast asleep and a majority of those that are awake are out enjoying themselves; Knowing that I’ll soon have to get up and face another day, however horrendous I feel.
10.   Tablets a day: Oohh dear. At least 22 per day at the moment. The minimum: 6 gabapentin, 6 hyoscine butylbromide, 2 tramadol, 2 paracetamol, 3 prochlorperazine maleate, 1 fexofenadine hydrochloride, 1 ferrous fumarate, 1 cholecalciferol. That’s not to mention my steroid inhaler 2 doses, twice per day, or nutritional supplements…
11.   Regarding alternative treatments: I have too much scientific knowledge to believe most of them would do any good... And my illness affects too many systems that I can’t see that they would really work. They’re not worth getting my hopes up over, I wouldn’t want to have to deal with the disappointment of some supposed ‘miracle cure’ not working. I’ve tried a few things in the past, and needless to say I’m still ill. More ill in fact.
12.   If I had to choose between an invisible illness or visible I would choose: if the question is whether I’d rather my illness was visible or invisible then I’d choose invisible illness, I think. But if it was a choice between having CFS (an invisible illness) or something else that’s visible, I may well chose the visible option, because I’m sure a lot of visible illnesses are easier to cope with than CFS. I do like the fact that if someone only sees me sitting down when I’ve rested lots they almost certainly won’t know I’m ill. It gives me a sense of control about who I tell or when I tell them (apart from the fact I now use a mobility scooter, kind of gives it away a little..). I know when my illness was truly invisible it did become problematic at times, like when people don’t offer help when you could do with a hand, or when no-one offers you a seat on a bus, or when people assume you are young and healthy so should offer your seat to someone older, or you get weird looks or hurtful comments when you catch the bus 1 stop or get the lift instead of going up one flight of stairs etc. I can see why people get frustrated by having an invisible illness- when you’re struggling like you wouldn’t believe and then someone laughs and calls you lazy..? Wouldn’t you feel a pang of jealousy that most people your age wouldn’t think twice about something that could be seriously painful or even impossible for you..? But being visibly ill isn’t easy either. People assume you need help. You get treated differently. People suddenly think you’re not intelligent because you can’t walk as well. It’s a strange world.
13.   Regarding working and career: If I get any worse I won’t get through my university course, and therefore won’t get to do the career I want to do. If this happens I will be absolutely gutted. Not massively surprised, but gutted. I’m very likely to have to work part-time if/when I do qualify- but that’s something that I could deal with.
14.   People would be surprised to know: that there is very little funding for research into causes of and a cure for ME in comparison with other illnesses. Loads of abnormalities have been found in ME patients, yet there is currently no real treatment. We’re just given a few drugs to help out a bit with a few symptoms and told to do less and rest more pretty much. Although the medical help I have received has improved now, to start with I was refused any painkillers because my difficulties were long-term. I was just basically left to get on with it- no follow up appointments, no treatment, no proper advice. I was left to work things out for myself- and make myself worse in the process.
15.   The hardest thing to accept about my new reality has been: that it is chronic. If I feel better one day than I did the day before it doesn’t mean a step closer to recovery or normality, it’s just part of the fluctuating nature of the illness. And you can’t even make the most of the days when you feel a little bit better, otherwise you risk having several unbearably horrendous days.
16.   Something I never thought I could do with my illness that I did was: Go on tour with a county wind-band. It’s not something I’d be able to manage now, but I’m proud that I did it despite my illness. Yes, it meant a lot of days feeling pretty naff afterwards, but it was worth it. I was lucky to have friends who sat on numerous benches and in numerous cafes with me; without their understanding it wouldn’t have been possible. I didn’t manage many rehearsals, and I only actually played to the end of one concert. But I was there and that’s something I’m proud I managed.
17.   The commercials about my illness: Lol, as far as I know there aren’t any. Maybe more people would have heard of it and understand more if there were.
18.   Something I really miss doing since I was diagnosed is: walking around without pain. I could walk as far as I wanted before I got ill. I could browse round shops for hours without even thinking about it, or wander around with my dog. Now I can barely walk at all. Thankfully I have got my freedom back thanks to my awesome scooter, but it’s not the same as being able to get somewhere completely unaided.
19.   It was really hard to have to give up: my life as I knew it. To start with I felt like I’d lost part of who I was. I realised that I’d always defined myself according to what I did, then I couldn’t do all that I wanted to do anymore.
20.   A new hobby I have taken up since my diagnosis is: ooo, staring at walls or lying in bed with my eyes closed.. I’ll go for staring at walls. Seriously, it seems so much more appealing when literally anything else makes you exhausted. And you can do it pretty much anywhere: sitting in bed, or sitting in your chair, or in lectures when you have lost concentration and have no idea what’s going on or how you got there! You should try it sometime ;) I’m not saying it’s thrilling, but it passes the time of day.
21.   If I could have one day of feeling normal again: feeling or being? I’ll assume being.. I’d do all the things I’d been needing to do for days/weeks/months while it took 1/20th of the time. And I’d see as many people as I possibly could and chat and laugh incessantly. And I’d run in the fields with my dog- just run and run. And I would do something nice for my friends and family for supporting me through this nightmare. And I would get loads of uni work done while I could actually think straight and concentrate. Blimey, it would be one busy day ;)
22.   My illness has taught me: that life isn’t fair + That you have to make the most of what you’ve got + That I never appreciated how much I had and how lucky I was + That nobody should  take things for granted + To appreciate normality.
23.   Want to know a secret: I’m scared I’ll never get better. I hope every day that I will, but there’s no way of knowing for sure, and that is terrifying.
24.    But I love it when people: Try to understand. Try to include me. Do nice things or send me nice messages when I’m ill in bed or have been feeling particularly rough or down. Are there for me when I need them, even if I don’t chose to talk to them, just knowing that they’re there is a huge comfort.
25.   My favourite motto, scripture, quote that gets me through tough times is: It’s not about waiting for the storm to pass, it’s about learning to dance in the rain. It just reminds me that there are things that I can enjoy even while my life is somewhat limited. There’s no point in sitting around waiting to get better before I do anything in life, it’s about appreciating and enjoying what I can do- even if that just means appreciating the normality of it rather than the activity itself.
26.   When someone is diagnosed I’d like to tell them: It won’t be easy, but you’re stronger than you think you are. Try to re-evaluate your priorities and appreciate that it’s not what you can do but who you are deep down that counts. Accept help. Don’t push people away. Explain to someone, anyone, what you’re going through.
27.   Something that has surprised me about living with an illness is:  how hard it is to wake up ill every day and not see the end in sight. How hard it is to live in the present and not look back at the past or dread what the future might hold. How difficult it is to deal with the fact that illness is unpredictable and you don’t know what’s around the corner.
28.   The nicest thing someone did for me when I wasn’t feeling well was: I won’t pick out an individual thing, because every one of my really close friends has been continually amazing, and my family have been incredible. It’s not one thing anyone has done for me that was especially nice, the thing that is especially nice is the fact that I still have such amazing people standing by me, despite not always coping perfectly through such a rough time. I’ve given you all some tough times, and you’ve done so many little (and sometimes big!) things to keep me going, either by physically helping me, or emotionally helping me through some dark times, so thank you.
29.   The fact that you read this list makes me feel: awkward. It’s pretty personal. But I hope it’s helped you understand me, but more importantly M.E. and invisible illnesses a little better. Also, it makes me feel grateful that there are both strangers and friends of mine out there who have made the effort to read this because they care and they want to understand. So thank you.
30.   Something I want people to take away from this: that chronic illness of any kind is a pretty grim experience; that they should try to appreciate the small things, and the normality in their lives; that doctors can’t make everything better- they don’t always have all the answers; that just because someone looks healthy on the outside, it doesn’t mean that they’re not feeling awfully unwell inside- don’t jump to conclusions.

1 comment:

  1. Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! Heather.vonstjames(at) Thanks!!