The delicate balance between a crash and a success.
It’s a fine line and can feel like you are walking a tightrope but it’s a tightrope that persists to be with you every second of everyday. Each person has some form of a tightrope but it is very different for those who are chronically or acutely unwell. The example for an abled body person who isn’t chronically unwell is simple, everyday when you cross the road, there is a chance that you could be hit by a bus. There is even more chance that you will be just fine and there will be no bus or it will slow down. Do you stop crossing the road because there is that chance?
However, for us severely unwell people, the tightrope is not about ‘chance’, I don’t know what to call it because it doesn’t even come under ‘choice’! Maybe let’s go with calling it ‘decision’ otherwise this blog is going to be difficult to understand. The joys of brain fog not letting my mind think properly. Apologies! It’s the decision between having a wash OR getting out in the chair for ten minutes. Not both. It’s an ‘either or’ situation. When I was hospitalised, the decisions were basic: do I push the buzzer for help or do I push my ear plug in to drown out the unbearable noise? I could only move my head once so I had the split second decision whether I could bear the noise for a second or I could get help for a bed pan. I should explain I was only able to press the buzzer by leaning my head onto it as my hands were too weak. I also could not communicate that my ear plug had come loose, I could only move my head slightly to push it in. It was that basic and incredibly degrading. Ultimately though, it was my life. The ‘decision’ tightrope generally meant I would end up waiting to have a wee because the noise was so unbearable. Living life on these very basic principles had a profound effect on how I treat life now I’m not as poorly as that, even though it was horrendous.
Now I’m safely back to being generally housebound, the ‘decision’ tightrope is just as hard to manage. On the other hand, having been in such a hopeless time in hospital, I have learnt a lot. However crazy it sounds, it’s important to live too. If going out for a wheelchair ride once a month means I spend weeks recovering, I personally feel I have done something, I have lived in some small way and for me that’s incredibly important. It not only gives me a mood lift but it also gives me a purpose. It is really good for your mental health. No, this condition isn’t psychosomatic but it is so essential to realise that when you are fighting chronic health problems you need to keep every part of you healthy.
I went to the Unrest premiere and the Houses of Parliament screening. It felt incredible to know that I was doing something worthwhile that would hopefully have an impact on care and understanding in the future. This felt like something I should spend my precious spoons of energy on, even if it meant I had payback for a while. The answer to this is balance. In my humble opinion, if I think I am able to do something, I do it. I just would leave when I was about to crash. I try to make a point of as soon as I feel the tiniest bit more poorly, I stop and go somewhere quiet and dark to recoup.
I’m not for one minute suggesting that you should look to fall off the tightrope but maybe test your balance a little. Despite the Post Exertional Malaise (PEM), that beats me into frenzy, I have to feel like I’m living. Even if it is only in some small way.
Unfortunately, there is more than one person ill in my life. In someways I think we all have it. For me, I have to start making memories with my family. You never know what is round the corner, living for the moment is part of that. It’s a very different approach to what I would normally do before disaster struck but now this is my life. There have been too many times I’ve missed…from my Gran passing away unexpectedly, then my Grampy (both of which I never got to say goodbye to) and then friends too, it really sounds never ending. I physically can’t do that again now I can speak. To lose someone and not be able whisper that you love them was the very worst feeling.
I’m not so focussed on moving forwards with my recovery, as to making memories with those that I love. That’s the plan for this year anyway. I’m going to be moving a bit on my tightrope this year.
I think.
Please tell me about your tightrope…
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I’d say all of us here are pretty much on the same wavelength. My personal experience with M.E./C.F.S. is 20 years and counting and I have to say throughout that time getting the balance right of risk to get reward and accepting the inevitable payback has been the cornerstone of my lifestyle with this nasty condition.
Even after 20 years it still takes me nearly three full hours to go from awake to fully conscious in the first part of the day (And I won’t say morning as I rarely know what they are unless I’ve had insomnia.). There are still days when the only option is to give up, turn over and go back to resting (I had just one such day today.). I’m one of the fortunate ones in that I am reasonably mobile, can still drive, can still lift reasonably heavy bags of shopping but whenever I do anything physical, mental or emotional I have to spend hours or days recovering. I haven’t been able to hold down a full time or part time job in all that time and am a full time drain on the State.
Every day is like a careful military operation of “If I do that in this way then there will be this much payback which I have to account for so I won’t be able to do anything on the next day or day after.”. I’ve now got so used to this being my daily reality that I still find people who know me well and know I have M.E./C.F.S. reacting oddly when I tell them in the middle of the day “That’s me done – I’m off back to bed to rest.”. Some people will never truly “get” M.E./C.F.S. unless they live with someone who has it. Those that do certainly get it.
So let’s celebrate the minor victories of doing things we never thought we could. Because we’re foggers and we’re fabulous!
Thank you for your comment. It’s crazy to think where our balance is and how much precision it takes. X
I can totally understand how you feel Jessica. I am not imobile and though some days it is a real struggle to get to the bathroom, I usually get there unaided.
I set myself the target of visiting every Cathedral in England and Wales over seventy, to raise money for the M.E. association. I love driving and though I cannot drive for more than an hour and a half, I get there. There is a huge payback and yesterday, my birthday was a reminder as I have been confined to bed for more than a week. When I am strong enough I take off around the country and I feel that I have a reason to be!
Many trips have had to be cancelled, yet, I will not beat myself up about this. I have M.E. and that is the nature of the illness. It is sunny today and I can’t get out, these days are hard. I do strongly believe in trying, however little the task may be.
Loved this, Jessica. I think my attitude to my own tightrope of chronic illness is much the same as yours. If I never pushed myself to do anything that would exacerbate my symptoms, I might feel better physically but I wouldn’t be really living and would suffer more mentally. Then again, there will always be times that I will have to say no, knowing that I would be too ill to get anything out of being there (or give anything either). I also think it’s important to not beat yourself up, either for overdoing things or for missing things and feeling you’re letting people down. It’s always hard making decisions like this, but reading this has helped me to know that I’m not alone. Thank you, and please keep sharing your insight- you have such a gift for bringing clarity to these difficult issues and helping me get my head round them!
I’m so sorry that you are suffering so much. Please hold onto hope. Things can turn around xxx
Making decisions on this tightrope is a daily and sometimes hourly task. I have more mobility than you do Jessica, but the repercussions are similar. When I know I don’t even have the energy to make it to the bathroom and back, a half-dozen times a day, do I drink more nutritious green juices in the hopes that they will help me improve? Will just going to the bathroom set me back?
There are so many days when I am just doing the very basics; getting food and going to the bathroom, and that is too much. I fear getting worse and having to be cared for full-time. I’ve been there once, away from family and my husband, and it was horrible.
My 32 years with ME/CFS has been a rollarcoaster. From months when I’ve been able to work part time and even do a bit of travelling, to crossing that invisible boundary not knowing getting a cold, or my period wiuld throw me back into bed. For how long? Six weeks…if I’m lucky. Six months? Years? It has all happened.
There was mold growing in our bedroom…I went from being able to work as a journalist to being back in bed and needing care. It’s been over 2 months this time and improvement is hard to see.
What gets me through these times? My husband’s contagious laughter and silly jokes. Our cat, Sara, curling her body around my hand. Her wee kitty snores as she sleeps. Friends dropping off food and praying for me. Seeing a meadowlark on our deck in the middle of a snowy winter. A reminder that spring will come.
I hope spring will come for you Jessica. Make wonderful memories with your husband, family and friends. Those are onevof the few things we get to keep.
Thank you for being so kind, we are very similar indeed! Sending love and sparkles! Xxx