Tag Archive | Scouts

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 🙂

Review of the Decade so far!

Shalom!

It has been a very long time since I posted (for those receiving this post on facebook, you can find my previous blog posts on http://messianickah.wordpress.com/ )

In the three or more years since I posted, a great deal has happened to us. Firstly we have lost three babies – identical twins at 14 weeks due to TTTS (twin-to-twin transfusion syndrome) in 2010 and then a singleton in early 2012.

My Dad died after a long illness in February 2011.

The very next weekend we moved from the city to a very remote location in Devon where we had no internet access (even dial-up wouldn’t function due to the very ancient split-line technology!) We have now moved again to a slightly less remote location in Cornwall. The timing of this original move was extremely painful, and a terrible wrench for my mum who was left behind.

In January 2012  our middle son was diagnosed with Type1 auto-immune Diabetes, a week after my last miscarriage. Again, the timing of this was extremely hard. Type1 Diabetes is often called Juvenile Diabetes, since it is often (though not always) diagnosed in childhood. This was a shock but not entirely a surprise – I had suspected diabetes for a very long time indeed, although I did not know the difference between types 1 and 2. More on that later, as it is a BIG subject and has utterly changed our lives as a family.

My eldest son has now turned 18 and left homeschool for Sixth Form college at the school where his dad works, which has made for a much easier and pleasant transition. For those of us left at home though it is a challenge to adjust after having him at home with us for almost 15 years! It is truly a life-change for me as well as for him.

The eldest two joined Scouts and Explorers (the younger two tried cubs and Scouts but couldn’t get on with it). I also started as a helper with Beaver Scouts, but had to give it up when I was without transport. I hope to take it up again this year.

We were sadly forced to sell our house at a loss in 2012 after our tenants did a very good job of destroying the place (and we, being green and naive at the time had not thought to obtain landlord’s insurance, or even a deposit – the tenants were people we knew who were down on their luck and we thought we would do them a favour, which makes what they did all the more heartbreaking).

So we are in rental accommodation again with no hope at this moment of buying a house again, sadly (unless our situation changes). The one good thing about that is that rental prices where we are now are fairly reasonable and we have a much bigger house than we originally left.

We have been in this house now for just over two months, and we are still in a mess! I am slowly going through everything trying to streamline and adjust to our new circumstances (with no garage or shed, and not allowed to use the loft space, which does nullify the extra space somewhat).

In between leaving our own home and coming here, we actually moved in effect five times: to an enormous rental house in a village in Devon, but which we had to leave after flooding. Secondly we lived for almost three years in a much-to0-small bungalow in another very remote village in Devon, but were flooded out after just a month in August 2011 and had to stay in a cottage temporarily. We moved back into the bungalow in October 2011. The bungalow was located in the most spectacularly beautiful countryside, with farmland all around. Sadly the experience was marred by cluster flies that we couldn’t get rid of, and crashing my car which made the whole of 2012 a very difficult year for me, with a 7 mile walk to the bus stop, we didn’t get out much!

Our new location is less remote, being 5 miles outside town instead of 15 miles out. At a pinch, if I were without transport again,’ it would be conceivably possible to walk to the local post office which is a couple of villages away, or even into town if I needed to.

However, after more than 10 years with a non-descript semi-diagnosis of CFS (‘chronic fatigue syndrome’) I finally obtained a more firm diagnosis of ME (‘Myalgic Encephalomyelitis’) again, another huge subject which merits further discussion. It’s not a diagnosis I am pleased to receive, and I still hope that it is wrong and have spent the last few months persuading my new GP to run tests to eliminate every possible other thing it could be, without any helpful results so far.

I have not found a suitable fellowship since we moved, and believe me I have looked very hard indeed. There used to be a Messianic Fellowship in Devon some years ago but it is long gone now. I have tried to make friendly links with Christians in the area though, and visiting several different Salvation Army corps in Devon and Cornwall. Sadly none of them are very close by, but I tend to be most comfortable with The Salvation Army as it is an active, working church. I have tried without success as well to find believers friendly to Israel who would be interested in forming a prayer group, but I’m sure that will come about in the L-RD’s time.

So all in all, this decade has been a very hard one so far, but I am confident that with this move, things are looking up, and I am looking forward to a year full of blessing.