"...And I don’t know when this month may be through"
I found this questionnaire related to invisible illness week a while ago and as this week is national ME awareness week, I thought I would be brave, and to be honest, I wasn't sure if I would share this. This is the most personal post I have ever written, I've touched on my illness before, but not so personally, so I'm a little nervous as to how it will be received. I'm not looking for sympathy, or to make anyone feel bad for me, I just want there to be more awareness of this illness, so that others who are going through this but are too weak with sickness to voice their opinions. don't have to suffer more than they already are. If we can eliminate lack of understanding it would make living with ME slightly easier. So here goes, I guess...
1. The illness I live with is: Chronic Fatigue Syndrome also known as CFS or Myalgic Encephalomyelitis or ME for short.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is:
Not being able to live life in a normal way. I've had to cut back and cut out so many things from my life just so I can survive. And I'm not talking chocolate or shopping less, I mean university and my social life. My actual life, cut down into managable peices. When I got ill I was studying at the London College of Fashion, the place I wanted to be since I was 14 years old. The ME made studying impossible, at first I fighted it as much as I could, but it was useless and after weeks of extreme pain, fatigue and other symptoms I postponded my course. I've had to put my dreams on hold.. I've missed out so much with my friends, canceled on them many times. I found it very hard seeing my best friend out partying, knowing that I couldn't do that with her anymore was heart breaking. Its been 4 years now, and I still live with the emotional pain of having the life I was used to and working so hard for taken away from me.
5. Most people assume:
That I'm recovered. If I had a penny everytime I heard the words "but you look so well" and "so you're better now", "you can't still be ill!" I would be a very rich lady. I look well most of the time when I see people A because I hardly ever meet up with anyone when I feel awful and B I use a lot of make up to make me look well.
6. The hardest part about mornings are: Waking up to groundhog day. I often don't know what day of the week it is. That friday feeling and the dreaded sunday/monday morning blues haven't been part of my life for a long, long time. You might think that doesn't sound too bad, but believe me, it makes life dull, every day is pretty much the same. I feel like I'm standing still and the world is turning without me. I feel cheated every birthday spent with ME, my body gets older, but I have not progressed with my life. This is why I called this post "I’ve been living in this month of Sundays..." - Lyrics from a song called Month of Sundays by Passenger. I find I can relate to this song really well in respects of my illness.
7. My favorite medical TV show is: None. Not really sure why this question is here...I deal with enough doctors, I don’t want to involve the medical world into my spare time as well.
8. A gadget I couldn’t live without is: My IPod Touch. I use it to have access to the word. It's great for when I'm not feeling well, I can read blogs or check out the latest photos on instgram from my bed. I also would be lost with out it as I use it for meditation.
9. The hardest part about nights are: when I have Insomnia. The longer I'm awake, the worse the pains in my arms or legs get, the more likely the next day is a write off.
10. Each day I take __ pills & vitamins. (No comments, please): loads of suppliments recomended to me by the chronic fatigue specialist. NT factor powers, herbs - a brown liquid that tastes as bad as it looks!
11. Regarding alternative treatments I: am willing to
try anything, and have tried so many things. Acupunture, Spiritual Healing, The Gupta Programme, Herbs. All have helped ease the symptoms but not cure them. I'm currently on the look out for something new to try.
12. If I had to choose between an invisible illness or visible I would choose: I would much prefer no illness, but I would say visible. I've been made to feel like a criminal and a liar by people who do not understand this illness. If I had a broken leg they would be so much more understanding. Instead I'm faced not only with illness worse than a broken leg, but other peoples judgements, which a lot of the time are not very nice.
13. Regarding working and career: I’m not healthy
enough to hold down a job or study right now. I wish so much that I was. People ask all the time, "so, what are you going to do, you can't not do anything" "you could work 15 hours a week", "work from home doing a little bit each day" and one of the worset "but don't you get bored" I can't even tell you how much it hurts to hear these things, firstly because I hate people thinking I'm lazy, secondly becuase it hurts so much that I'm not able to work, and yes I get so bored. I never knew what bordom was until I became ill. My biggest achievement so far with recovery is attending three classes a week, two are art classes, for two hours on a tuesday and two hours on a thursday, its a no stress, quiet environment close to home. I'm not working for a degree or certificate just painting for the fun of it. It's close enough that if I feel too ill my mum can pick me up early. The last lesson is a one hour driving lesson. Thats five hours a week and truth be told I've missed many classes as I am struggling with them. I've recently dropped the art class as a result.
What the future holds with my career, I don't know. I'm ambitious and creative, and I've always had a drive to do well. Right now my job is to get myself as well as possible. Something I do see as full time work, I have to be so careful with daily activity, or planing activities, there's not much room for spontaneity, I have to keep calm, avoid stress and try and entertain myself on little energy. Not an easy task for someone who loves getting out there and experiencing the world.
14. People would be surprised to know: That I lie a lot when asked how I am. I live with this day in day out, why would I want to discuss how awful I feel with every person who asks? I also get very uncomfortable with the sympathetic looks or the judgmental looks which I sometimes get. I mean, if you asked me how I was every time we talked (assuming we talk a lot) and I say I feel pretty crap/like death every time, I think it's only in human nature for those who do not understand the illness to start thinking I'm being dramatic or making it up, so for these reasons it seems safer to say "I'm okay".
15. The hardest thing to accept about my new reality has been: Not knowing when this will end, at first my mum and I thought I needed a month or two, then a year seemed like enough time, now we realise there is no time limit on this. I have so much hope every year that this will be the year I get better, I try not to dwell on the fact that this could be me for the next 2, 5, 10, 15 + years. When that thought comes to mind I feel an overwhelming amount of sorrow and panic, so I've learnt to keep it at bay as much as I can. In the past especially the only way I could see out of this was if I died. Taking my own life is something I would never do, but yes, the thought did cross my mind. I just couldn't inflict the grief of loosing a child as well as everyone else we've lost on to my mum and family. My sadness at that thought was greater than anything else. My mum has kept me going in my darkest of times. Without her, I don't know where I would be.
16. Something I never thought I could do with my illness that I did was: going to my art classes, ok it's not university level, anyone can give it a go, but I have learnt a lot of techniques from my amazing, enthusiastic teacher. It's been nice to have a small amount of time away from home and those who know me, in class I'm just Emma. When it's come up I've told them that I've got ME but a lot don't know and I love that. I'm also so proud that I have started to learn to drive, it is taking a while, as I can only have a lesson when I feel well enough, I have gone weeks at a time without. When I pass, I will only be driving locally on good days for very short periods of time, but it's a step in the right direction.
17. The commercials about my illness: I've never seen a commercial where my illness was meantioned. There's a lot of research going on behind the scenes, but in the media it can still be seen as "yuppie flu", an excuse for being lazy, a mental condition - I've seen some very upsetting articals, but also I've found that the media is starting to take it more seriously now.
18. Something I really miss since I was diagnosed is: The independence, I've had to depend on my mum to take me to appointments, to see friends and be on standby just incase I can't manage the time agreed. My mum has had to talk for me when I've been unable, to cook, clean etc. There is no way I could manage living on my own. I miss going to gigs with my best friend, we would go a lot before I was ill, always standing, often found at the front. We had so much fun, and then after we would find ourselves running for the last train home. I have been to a few since being ill, always seated, always taken by car, always with a garentee of feeling awful afterwards.
19. It was really hard to have to give up: Studying. Before I got ill, all I knew was studying, all I wanted was to was study and do well so that I could have the best start in a creative working environment. I tried my best to keep up at first, I could hardly manage two days a week, and in the end never a full day. My mum and head of course has to sit me down and tell me I needed to stop before I admitted to myself that I couldn't cope.
20. A new hobby I have taken up since my diagnosis is: Meditation. If everyone in the world was made to do this, there would be a lot less stress. I'd recommend it to anyone, check out YouTube for millions of different styles. One of my favourite being Yoga Nidra.
21. If I could have one day of feeling normal again I would: Not be able to stop smiling. I don't think I would know what to do with myself at all!
22. My illness has taught me: a lot. It's been an eye opener at times. I've found out who my true friends are, which has been upsetting at times, but actually a positive thing, who needs friends who don't actually care.
I've learnt that the most important things in life are family, friends, health and happiness. It might seem obvious but before I got ill I put more importance on being successful in work, which made what is truly important suffer.
23. Want to know a secret? One thing people say that gets under my skin is: When people make assumptions. I deal with peoples assumptions almost daily. From assuming I'm well, to assuming I'm pretending to be ill, to assuming I should be able to keep up with them, even when they know I'm sick. An example of this would be when, now and then, I have used a wheelchair, when I'm lacking energy and need to walk more than I can manage or if I need to seriously concentrate. People do not like to see someone in a wheelchair get up and walk. No. The looks I've had when I've got out of the damn chair have been awful, especially once from a man who was also using a wheelchair. They assume I'm being lazy, or making a joke out of other wheelchair users. I feel like I need to go over and explain, whip out the card that explains I have ME that I carry with me just incase I have a funny turn or am unable to communicate when I'm out. But why should I need to explain myself?
24. But I love it when people: Actually understand or try to as much as they can, and those who are genuinely interested in how I am doing. These people make me feel more normal.
25. My favorite motto, scripture, quote that gets me through tough times is: Firstly, "Let it be" - I've found that there's no point stressing over the reasons why I got ill, or why me in the first place. Life isn't straightforward, there isn't a set path, and sometimes things happen that upset our plans. I've found so much comfort from these few words, I now try to apply them to every aspect of life. Secondly, "I’ll never give it up without a fight" lyrics from a song by The Alarm (here), I find strength and motivation from this song.
26. When someone is diagnosed I’d like to tell them: Not to fight it, ME will knock you for six, and you will not do yourself any favours at all. Look after yourself, eat right, and do things that make you happy as much as your energy envelope allows you. There's no shame in asking for help from family and friends. Most importantly do not give up hope, there is always hope and plenty of people make a full recovery. Believe you will recover, I think if you can truly believe that and take steps to help yourself, then it is 100% possible.
27. Something that has surprised me about living with an illness is:
How many amazing people I have met as a direct result of being ill. From my dear friend Danni, who also has ME, we met at a hospital course for people ages 18-27 who have ME, she has been an endless source of support and understanding as well as a lot of fun.
I've also met a lot of amazing people who give up their own time to help others for free, especially Healers.
28. The nicest thing someone did for me when I wasn’t feeling well was: I can't think of one thing that stands out, there's been many little things though, from family friends lending me DVDs, to friends visiting me at home. My brother suprising me with an abercrombie and fitch hoodie from his New York trip, my uncle sending me postcards even though he lives very close by. I've experienced a lot of kindness.
29. I’m involved with Invisible Illness Week because: I have an invisible illness, as do many others who don't get support from friends and family. Chances are, you will at some point in your life have to deal with someone who has an invisible illness, if I can help just one person be more understanding by spreading the word, then sharing this will be worth it.
This afternoon I had tea and cake as part of the #bluesunday to raise awarness and money for a cure for ME.
30. The fact that you read this list makes me feel: Slightly uncomfortable, especially if I know you outside of the blogging world. The fact that you've got to question 30 means so much to me!
And now I can breathe, this has taken me a few days to answer! I hope that you now have more of an insight into what it feels like living with ME and that you didn't fall asleep half way through! ME awareness week runs from the 12 -17th May. Thank you all for reading, and to my fellow sufferers, keep smiling, a month of Sundays have to end at some point.
All images except the last which is by myself are ones I have found on Pinterest and I do not own or claim to own the copyyright.