Tag Archive | Guides

Autumn Update

autumn

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.

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Jag har haft fullt upp!

It has all fallen apart a bit. I tend to do this. I tend to take on so much that I burn out and end up not finishing anything. (Sigh) The title is a Swedish phrase, which means roughly ‘I have had a full schedule’, or ‘I’ve been super-busy’! 🙂

I have picked up a dozen or more books and started them, but not finished them. In fact, I took a bunch of half-read books back to the library yesterday. I’m trying not to kick myself about the Read52 challenge. I don’t think I could catch up now, unless I get credit for good intentions!

I’m also so far behind in the Bible in 90 Days challenge this time that I really have no hope (or intention, sorry) of catching up. I also got to the end of Job just feeling that I was getting very little out of it this time round. Last year I read through faithfully every day, and marked all the words of God in red, and anything else important (like repetition and themes) in blue, and I really loved it. I saw new things in it and I’m really glad I did it. But this time, I had already switched to listening on audio Bible by the time I got to Joshua instead of actually reading it, as I was finding it so… boring! I really don’t want to feel that way about Bible reading.

So actually I’m juggling. I have a lot of plates to spin – being a wife and ‘mum’ with ME, homeschooling, housework, study, and trying to set up a Ministry / Business. I have never managed to find a great balance between homeschooling and housework – when the children were young, I figured that if I managed to get out of bed and the children were basically washed and fed and clothed and happy, everything else could look after itself.

I have been wondering why I decided to take on the extra spinning plates of study and business. Maybe a psychoanalyst is called for – do I have some need to set myself up to fail? Actually, I think I’m pretty driven, perhaps I need to prove myself in some way (I’m not sure to whom though or why). But being driven and fighting ME is a pretty tough battle. Actually I have heard that there’s quite a bit of evidence that a lot of people who get ME are A-type personalities (I tried to look for a good article to link to but I couldn’t find one).

I have never quite learned to pace myself either. I always seem to need to start something new, take on a little bit more, work a little bit harder. I help out at Scouts and Guides in a limited capacity, I teach (Sunday School, very basic Hebrew, adult Bible Study, although actually I haven’t done any classes since we moved down here as there doesn’t seem to be any interest), I’m now involved with two churches, I study (and now I ‘have’ to be studying my OU course, just about everything else looks more interesting which is another challenge! I’m even trying to learn Cornish in my ‘spare time’!)

I constantly feel on the edge of relapse, but resting doesn’t help anyway. I figure that, if I’m going to feel desperately tired and in pain whether I rest or get on with it anyway, I might as well just get on with it. Thankfully my ME is not severe (although I have had a few bad patches, and poor husband always seems me at my worst as I’m always pretty wrecked by the end of the day). I still don’t want to accept that it is ME to be quite honest. I would much rather have something that’s easily fixable, curable. But I don’t go to the GP anymore. My current one is nicer and more helpful than previous ones, but he’s no help really. When the blood-tests always come back negative or ‘borderline’ there’s no clear direction on how to treat me. So until and unless I can’t, I keep on keeping on. I keep picking up books and starting them. I keep trying to read my Bible. I keep studying and writing and doing my little groups. The children are washed and clothed and fed and reasonably happy. That sounds like a good life to me 🙂