Consequences

1995 Board game

Didn’t there used to be a game called consequences? Not sure I ever played it, I’m not really into board games. Too much time playing monopoly on Saturday mornings as a child, or rather losing monopoly. Mary was saying to me this morning how we sometimes forget there are consequences, we can’t just have fun and games, she was talking about my health. After three afternoons of going out in my wheelchair; today I have been awoken by a severe headache. When this happens, all too often, the headache literally drags me out of a deep sleep as it did this morning. The pain and nausea awaken me. This morning was most likely a migraine, but as I missed the aura, being asleep at the time, it’s hard to be sure. I do know that it seems to be responding, slowly, to the migraine medication, Zolmitripan. At least it is after the second one, which I had to wait two hours to take, then another hour to take effect.

I was woken at 4am, it’s now 8.05am and the pain is lifting, leaving me feeling, rung out and yuk. The plans for the whole day need to change because of this. I just need quiet and not too much light. The tablets are good, but not 100% effective. What they do is stop the agonising, head splitting headache in its tracks and leave a numb rung out feeling, that normally follows the day after a migraine. You feel like you have become very fragile, like a china doll.

Today family are visiting, and I’d hoped to join them at Weatherspoon’s for lunch. But instead we’ve had to hastily rearrange my care so that Mary is free to go with them on her own. That takes its toll on Mary. Changed plans are never easy and in this case mean moving things around in the house so that I can have a quiet space in my bedroom which is also our lounge (See my blog “Bedroom, dining room, lounge, toilet.”), plus organising care and changing other plans for the day. All before Mary’s breakfast. I feel useless, lying here with a cool bag on my head looking pathetic. Needing all the usual things done for me on top of this extra.

We should have learnt by now about consequences. But I find that my memory for suffering is very short and my memory for joy very long. So that when things go wrong and I end up in difficulty, feeling nauseous and in agony, I forget it soon after. That’s why I wrote this on the day it happened. I need to be feeling it to remember it. I’m not sure if it’s a protective thing, or just a very good strategy, but either way it works well. I am not a miserable person. I don’t focus on the bad days. Even during a bad day, I don’t have to be free of pain for many minutes before I move on. My tendency is always to be optimistic and positive. Anyone who knows me well will agree with that. That’s the real reason I never learn about consequences. I have a very short memory. I will also use distraction and adrenaline to override pain and difficulty. If anyone visits, I refuse to look sad and gloomy. This is a very common thing to do for those who are chronically sick. They will mask their real feeling behind a smile and laugh. It’s amazing how effective that is at making people say, “You look so well.”

We tend to judge the degree of illness someone is suffering on how miserable they look or on how white they are. Misery is easy to hide, and I would suggest desirable to do so. Who wants to visit a misery? Don’t misunderstand me here, there are times when the pain becomes so bad you can’t ‘put on a brave face,’ at those times I avoid seeing people. But I find those times come in waves for me. Pain, in my case is more often wearingly long term (chronic). But I realise there will be those who are suffering from severe, constant pain, don’t assume I am talking about them. I can only talk about myself and people in my situation. Whiteness commonly comes with iron deficiency anaemia and bouts of nausea. In fact, people can often look very ill when they have a minor cold and very well when they are dying. I have seen two friends on the day of their death, both looked better than ever. I never guessed it was the last day I would see them. If you have ever seen someone the day after a major heart attack, they can look bright and well. Yet they have not only nearly died, but still have major heart damage. Add into the picture all the major illnesses that show few external signs till the very end and its all very confusing. I always find it odd that a lot of cancers are invisible until treatment starts. The treatment makes people very ill, until it hopefully cures them. My point being that something as life threatening as cancer can sometimes be unseen until treatment starts. We cannot make a diagnosis of how well someone is by how they look. Certainly, a smiling red face tells us nothing. Again, I understand there are those who are severely ill and look it. I am talking of the many who are severely ill and don’t look it. (See my blog “You look so well.”)

I made the best of today, managed to see our visitors a couple of times during the day. Mary brought them in after each of their trips out. It was lovely to be included, but I needed the long breaks in between to recover.

I am writing this last section the next day. Migraine is gone and I am feeling that strange post migraine euphoria, that only migraine sufferers will understand fully. It’s like a weight has been lifted and you are left feeling a little lighter than usual as if gravity has reduced. I tend to get more ringing in my ears (tinnitus) but that may not be common. When I was still able to walk, I used to feel like going for a walk or even a run on a morning after a migraine. The freedom and joy of it having gone makes you want to rejoice. Now I run in my head, although I am always curious how my smart watch seems to find I have done some steps every day, in my bed! I don’t want to disappoint those of you with smart watches who assume every step on your watch you really took. Perhaps my watch counts the steps I take in my imagination? Don’t worry, I know that its based on arm movement so the few steps it counts are my arm moving.

There are consequences to everything we do. That applies whether you are ill or not, it’s just more obvious physically when you are ill. Activity takes a toll easily when your body is weaker. I so enjoy getting out of the house and this won’t stop me. I just need to pace it and allow recovery days. Today is a quiet day before I try out the swimming pool tomorrow (see my blog “Sink or swim.”) Let’s see if I can remember the lesson learnt.

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Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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