When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.
I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.
The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.
So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.
It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.
There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.
I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.
Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.
Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!
Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.
I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?
Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.
I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.
When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.
My next post will be happy, I promise.