The Blog of the Frog

Got lots to tie up 🙂

The review was okay, quite amusing really. Because my paediatrician and (paediatric) specialist are no longer involved with me after the review they finally agreed with everything I’d been trying to tell them for years and were suitably obliging! We’ve had our ups and downs over the years but it ended on a really good note. My specialist is even coming round for mince pies before Christmas…Must be my dynamic personality (ha!), my OT wanted to stay in touch too 😆

A couple of months ago I acquired a new social worker. I used to have one, but he moved to another town about 4 years ago and I never got a replacement. To be honest (which I can be, my blog!) I don’t like her. So I was much cheered to discover she’s retiring in February as long as her house sells (anyone want a nice place in Devon?)

My new Occupational Therapist (OT), who my former OT had spent the last year bringing with her so she could get to know me and the situation, got seconded! So after all that I’m having another new one, though I’m hoping I might get her back because she’s only been seconded for a year and my new OT coincidentally also retires in February! Though my paediatric OT is coming with my new new OT to introduce us (a week tomorrow) which is a nice bonus.

So now it’s just me, my GPs (it’s a husband/wife job share), a soon to be retiring social worker and a soon to be retiring OT! Plus my parents of course. All of which will leave us to our own devices unless we ask them for something.

I never knew one room could take so long to sort. It’s looked “nearly finished” for over a month, but somehow no matter how much I do it doesn’t seem to get much nearer! I’m sure it’ll suddenly come together and I’m hoping to finish next week. I brought my first box downstairs yesterday, a box of boxes! Gave me a tremendous boost, I never knew a box of empty boxes could be so therapeutic…

I need to find some smallish boxes to store some of the things I’m keeping (permanent storage, not just moving storage), but 90% of the unboxed stuff is now stuff I want, most of the sorting is done. Except for the box of boxes I packed just before I came down yesterday none of the things I want have been packed because I didn’t want to mix them up with the things I don’t want (which are all packed – well, 90% of them!). Some of the things I found were…interesting to say the least. In my bookcase (hidden behind the books) I found 7 year old yoghurt drops! To say nothing of the 8 year old locust beans (which absolutely stank).

Building regs have now been approved 🙂 The architect and chap at the council who’s job title escapes me at the moment are now builder hunting! *Jumps up and down* tis most exciting.

I’m really looking forward to half term this time, with having to be downstairs for Wednesdays and usually I come down for part of Tuesday and Thursday to, then grabbing the rest of the week upstairs cleaning and when I am downstairs always planning what I’m going to do when I get back upstairs I feel like I haven’t stopped for the last two months. A break will be welcome!

My DLA was up for renewal on my birthday, I was on high care and high mobility. Upon renewal they awarded middle care and high mobility. We weren’t happy with that, after all nothing’s changed since they saw fit to award me high care, so we asked for the decision to be looked at again. They left it unchanged, cos apparently I can’t need to go to the toilet most often than normal people as I don’t have a disease of the bowel or bladder (er..hello, muscle weakness which affects my whole body – thus all my internal workings as well as the external!) so we decided to appeal. Got a letter confirming and saying they’d be in touch in the next, something like 14, weeks! So we were all geared up to go to an appeal and it was a very pleasant surprise to get a letter last week saying they’d looked at it again again and decided I could have my high rate care back!

Of course meanwhile the ever competent DWP have stopped my Incapacity Benefit because they supposedly sent me two IB50s back in July (on high care you’re exempt from the IB50, on anything lower you have to fill them out), neither of which I received. Also despite the fact they must have been aware that the decision was being looked at again. Despite that my IB was still being paid, then as soon as they changed their decision and awarded high care it miraculously stopped! Of course the first I knew about any of this was when it had been a week since I was due a payment and nothing had happened so I rang them up. Not amused – luckily I have some savings to fall back on but they could’ve left me in a right mess! She said to allow 5 working days to sort up, it’s been 5 days today and they’ve now missed 2 payments. Total incompetence!

Welcome to the house of fun…

Right, about time for an update I think! I’ll tackle these in the same order as the my post of the 5th August

Medical – Loose ends mostly tied up now. We have a hand over meeting scheduled for the 20th, Wednesday, but I’m really not happy about it as it’s now the first week of Cannington not the second. We’re going to see if they still feel it’s necessary after so long, and if so if anything can be done about it. Doesn’t look great now it’s so close but we’ll see…

Stair Climber – Fab! What more can I say? It’s so wonderful. I’ve spent a few nights up there, the first night was really odd and I didn’t much like it but after that it’s been fun to sleep upstairs again! Not as comfortable though, cos I don’t have my electric bed. The clearing has been emotional and traumatic but satisfying, enjoyable in a way and amazing what turns up!
I’ve got 6 bags of clothes which are on their way to charity shop, filled the recycling box two or three times with papers and other recyclable objects, less than a bag of stuff for the bin and I’ve currently got boxes all over the floor of my room – I’ll get a couple of pictures when I’m finished! It’s almost all done now, some of the boxes need repacking but there isn’t much unsorted stuff left in the cupboards. The actual clearing is wearing a bit thin now, can’t wait to be done! I’m looking for a good car boot sale now 😉

Extension – No news, STILL waiting for building regs.

Assessment – It’s happening TOMORROW!

Neopets TCGs – The boxes Suzie brought back from America arrived on the 16th August, no problems! The ones I was expecting from Australia arrived on 1st September, and I only had to pay £22.16 in customs, which was a big relief! I also sort of bought some more, from England 😳
I opened some of them for myself, but now I have 504 booster packs (14 boxes…) of cards to try and sell. When (got to be optimistic!) I sell them though, I’ll have got the money back for all the cards that I’ve kept, and it’s not a cheap hobby! I should even turn a small profit, but all I wanted was to break even.

So now I’m almost ready to put everything behind me and move on. The only cloud is Ducky’s rabbit died on Tuesday, even though I never met Peanut somehow I felt very close to her, and her death has really upset me. I’ve never felt quite like this about someone else’s animal before.

So I just feel strange at the moment. I’m happy because my life is almost sorted (er…possibly), I’m overjoyed, excited and nervous about my assessment tomorrow and I’m upset because of Peanut. It’s weird to feel so happy and so sad at the same time.

It was the first day of Cannington today – or so we thought. Arrived twenty minutes late (we always seem to run very late when we first go back – out of practice!) to find the place deserted. Found someone and asked, to find Bob wasn’t even in today. Great, he’d forgotten to tell us!

I really didn’t want to go back home, so after pondering what to do we (mum & I) decided to be spontanious and go to Burnham-On-Sea. We had ice lollies and wandered along the prom – I even went right down the launching strip and let the waves lap (very gingerly) round my wheels! Not for long, obviously. Electrics and sea water don’t really mix…. – and then went into the centre and explored all the shops – I was ecstatic to find the best birthday card ever for Lyn, and got her present too 🙂 It was almost 1pm by this time so we went back to the car, collected lunch and went down onto the beach to eat it. I actually went onto the sand and even managed to put my feet in the sand! It was amazing, totally magical.

After lunch we finished our tour of the shops, went shopping in Somerfield and then drove home! Well, we decided to go back over the hills, entering via a route we’d never taken before. It didn’t work – we never found the hills and ended up with a tour of Bridgwater instead!

It really was such a nice day, not so much for where we went in that I felt so normal and totally free. Loads of overweight dogs there though 😆

Finally everything is starting to fall into place. It feels fantastic, yet as it’s all “in progress” I still can’t quite believe it’s happening. All this has been going on for so long.

Firstly all the hospital things are finally drawing to a close. There are still a few more tests to be done, but they’re not terribly likely. I also now have some notes in Bristol and some notes here, they’re in a bit of a mess and there are loads of them – so the genetisist is going to check that everything that was meant to be done HAS actually been done! Whilst they didn’t find anything almost everyone agrees that it is very unlikely to be ME, and if it is it’s a form so a-typical that using that particular “label” is useless anyway as it doesn’t describe my particular symtoms at all. Therefore, from this point onwards, I am moving on and whenever anyone asks what’s wrong I shall tell them I have an undiagnosed condition that causes severe muscle weakness. Voila, end of chapter, semi-happy froggy and finally able to move on. Well, almost. Just got to let them tie up the loose ends.

Secondly I’ve been waiting for a stair climber on loan from social services so I can clear out my room, finally got a phone call yesterday to say it’s coming on the 24th August 🙂 Still 3 weeks away, but it’s so nice to have a date after waiting so long. It’s been back for well over a month, but evidently it takes this long to service it 🙄 I’m going to box up everything I want to keep, then sort the rest into car boot/charity shop/bin. Stuff for the charity shop and bin will go instantly, then hopefully I’ll get round to having a car boot in October. Bit weird to be going upstairs again after so many years, my room is more or less frozen in time from when I was about twelve/thirteen.

Thirdly the plans for the extension are really coming together now. It’s been submitted to building regs (hopefully there won’t be any problems) and the architect reckons the builders will probably start approximately April next year. He came on Thursday afternoon and we sorted out the finer details – door type, window type, light switches, plug sockets – and somehow even though we didn’t seem to do much he didn’t leave until gone 5pm, he was here about 2 hours. I’ve put so many sockets in, but I have a lot of electrical appliances 😆
April may seem like a long time away, but it’s taken so long to get to this point it doesn’t really seem too bad. Eight months is nothing compared to the time spent so far! Now I get to go kitchen and bathroom shopping (well, browsing).

Fourthly I finally got an assessment interview for something very important I’ve been waiting a very long time for. I don’t want to go into details yet, but it means more to me than anything, I’m so excited. No date yet, just a letter confirming that someone will contact me in the near future to arrange a time and date.

Fifthly Suzie went to America and very kindly helped me fuel my Neopets obsession by letting me get some Neopets TCGs shipped to her which she then brought back and is going to post to me next week 🙂 Saved me money even having to pay an extra shipping charge because of customs duty. I’ve been waiting so long for them it’s very exciting! I’m also expecting some more from Australia (which, knowing my luck, I’ll probably get clobbered with about £50 of customs charges) which I’ve been waiting 6 weeks for (surface mail) and I’m getting impatient 😉

So that’s my news! It feels good to sit down and write, I do believe I’ve missed it! I’ll have to start trying more often again 🙂

*Clings to friends* If you can even remember who I am 🙄

Firstly I have blocked the words “phone” and “mobile” from comments as they seemed to make up a large proportion of todays spam. Don’t post using either of those words or they’ll fall into a big black hole! Secondly I’ve blocked trackbacks as the spammers were using those to get round comment approval. Thirdly I just deleted almost 2,000 comments, I think they were all spam but I apologise if I deleted any legit comments in those!

To be honest I really don’t know where to start and I don’t think I have the energy anyway! I started writing this almostÂ? two month ago, then got locked out by aforementioned spammers!

Â? I’m just so stressed, I really didn’t know it was possible to be so stressed!

My birthday affected me badly, I knew it would be bad but it was much worse than I thought it would be – owing, in part, to the fact Molly died on the evening of 21st June (my birthday is 22nd). She’d not been right for over a month and I was expecting it at some point, but I had no idea when and it was sudden – she was fine the night before.

Psychologically being eighteen and officially an adult, especiallyÂ? when I’m under so much stress with other things at the moment, was very damaging :lol:. Concious of how things are at the moment and losing all those years.

I have an appointment with genetics on Tuesday, which is my immediate stress point at the moment. Seeing as I’ve been typing this for months I won’t go into the rest at the moment or this will never get posted!

More to update soon, hopefully good news 🙂

Oh and I’ve moved this (and upgraded!) to try and escape the spammers, which you’ll have already found out if you’re reading this…ho hum.

I feel like writing but there’s not really much I want to write about, so I shall start by wishing you all an extremely belated christmas!

I find it very hard to put my feelings into words, an awful lot has happened over the last six months but I really haven’t wanted to write it down – it’s been such a rollercoaster. I’ve not really done anything that I was doing before, just can’t settle to anything.

The muscle biopsy results came back normal, though they didn’t check the mitochondria. I never really thought it would come back abnormal, though I sort of hoped. This rules out all the really nasty stuff (progressive muscular dystrophies..etc) but I haven’t been deteriorating (and I’ve had my CPK levels checked in the past and they’ve been normal. CPK is an enzyme found in the brain, heart and skeletal muscle, if the muscle tissue is damaged it leaks into the bloodstream) so I never thought that was a possibility. We have a few more tests left to do and if they come back normal (which everyone seems to think they will now) I don’t really know what to think.

I’m so very tired, physically and emotionally drained. I’ve not been sleeping well and just bah!

I had a decent Christmas considering, for the first year ever I just wasn’t in the mood which shows how bad things must be 😉 I owe thank yous and things to a few people which I will get to soon, I promise. For now, thank you everyone!

I have x-rays (eventually) on Wednesday. It’s been such a saga to get these done, I won’t explain suffice to say that this appt was originally scheduled for October and has been cancelled and rescheduled multiple times since then because they kept being incompetent!

If I feel like it I think I’d quite like to have the end of term down in writing – I went to Selworthy’s carol service on the 14th, the reception christmas party at my old primary school on the 16th and then the last afternoon of term in reception on the 21st.