Sunday, 26 February 2012

A Break

No I'm not taking a break from blogging, I am finally getting more than a couple of weeks intervals between therapy sessions. My physiotherapist on Wednesday has given me a month's break before my next check-in with him. He also said if I don't deteriorate any when I come he will probably discharge me with my regime of physiotherapy.

So good news there. My OT which I attended on Thursday wanted to see me in 3 to 4 weeks but said she was booked solid for the coming month as far as she knew so it would probably be around 5 to 6 weeks before I got a appointment to return.

As the receptionist who makes the appointments had left for the day by the time I walked back to the reception area we pushed the sheet the therapist gave me through the glass windows for her to get the next day and send out an appointment to me for my next OT check-in.

I have gotten myself a small pocket camcorder, a Kodak PlaySport ZX5, which Amazon had on sale for amount 40% off RRP. I also bought a 16GB SDHC card, a tripod (gorrilla pod), a pouch as well as a remote control (which is still to arrive, next week sometime according to seller).

So I seriously using my cam to do a video diary of my Fibro/RA/Carpal Tunnel etc., so that when I return to the OT I can accurately tell her how I got on with the hand splints she gave me as she asked me to last time. As I have extreme difficulty writing or typing I find that either audio or video records to be the easiest way to adequately keep track of my various aches, pains and difficulties.

I also got the cam to allow me to vlog my book reviews, this was my main reason for wanting one to be honest. I have fallen terribly behind in my reviewing as I couldn't handle the hand and wrist pain that typing up reviews was causing me. So I thought I could record my review, upload to a free service like YouTube and embed the review in a blog post.

I'm still learning to use the cam and trying to find the best quality, ease and resulting video at the moment. I'm using the health diary I am recording for myself as a way to get used to recording videos. I have found that I have extreme difficulty keeping my eyes trained on the camera lens and not wandering all over the place. That said I do this is real life and find it hard to look directly at people while speaking to them, so it's not just a video/cam problem, it's something I do a lot in real life.

It's actually a form of fibro-fog as I struggle to concentrate.

Well, my hands and wrists are starting to hurt again to I'll sign off here. Maybe I'll even post a vlog post here, who knows?!!!

Thursday, 23 February 2012

Carpal Tunnel Syndrome

Yes, it's happened yet again! I have a tentative diagnosis for yet another condition to add to my ever growing list.

I went to the OT at the hospital, yet another hour spent feeling less than optimistic about not only the present but the future.

The OT was thrilled and pleased about my 'supposed' marked improvement of my hand strength. I now according to measurements taken today have 150% on one hand and 100% on the other of increase of strength in my hands. That said, I had less than 10% three weeks ago at initial assessment. So to put into perspective I have around 25% - 30% on the minimum strength I should have in my hands for a female of my age.

She was shocked at how less than impressed about this improvement. As my pain in my hands and wrists has gotten more than 200% worse than it was previously there is also the fact that over the past few weeks I have begun to seriously drop objects I'm attempting to pick up or hold. As well as experiencing a lot of difficulty actually gripped any object, painfully difficulties, all in all for me personally on a day to day basis I have less functionality in both my hands regardless of what strength tests results I have. That only shows that when I squeeze as hard and as painfully as possible on the grippers I can on the 3 occasions I get each hand tested manage to hold the grip at a certain strength.

It's the same as saying that my PT can manipulate my shoulders to complete certain movements I can't personally do so repetitively. Unless I can do an action several times in row within a specific period of time being able to have another person manipulate said joint once under their own strength these results have to real impact on my daily functionality when all is said and done.

It seems the added pain and the dropping problems I am experiencing, as well as the lack of sleep I am getting due to severe hand pain, is caused by something called Carpal Tunnel Syndrome. I was given two sets of splints for my hands/wrists, one to use during the day when doing any activity where I need to grip anything, so basically most of the time, and another to wear at night.

I have to come back in 3 to 4 weeks, I'm not sure when as the receptionist had left for the day when I got back to the entrance so I had to put my sheet with the time frame from the OT through the gap between the closed windows and hope the receptionist gets it OK tomorrow and sends out an appointment to me. The OT said although she wants to see me within the month it will probably 5 to 6 weeks as she's booked solid for the next month.

I'll have to stop here for now as even with my hand splints on my hands and wrists are becoming very painful, too painful to continue on for now. I'll post tomorrow about my next step in the shower saga, it's not good news at all!!

Wednesday, 22 February 2012

Camera Here

Well the Kodak pocket (handheld) camcorder I bought arrived today, along-with the tripod I bought but the memory card I ordered at the same time has only just now been dispatched from the Jersey 'partner' of Amazon and estimated delivery not till Saturday at the earliest. As the internal memory in video mode is only 12 seconds - yes you read right seconds, not minutes - I can't really test it properly until the sdhc card arrives.

I've completely charged the device which took around 3 hours to do roughly, set all the relevant details into the settings and checked it sits on the tripod correctly. But unfortunately 12 second recordings can't really allow you proper testing time.

So my practice with my camera is on hold till the 8GB SDHC card I bought with the camera arrives from IndigoStarfish. Something I've found with this 'partner' company is that any orders sent to them even when an item is in stock takes at least 24 to 48 hours to be dispatched and several days to actually arrive. Rather false advertising to say next day or 2 day delivery on items farmed out to them on the order pages.

But nothing to be done for that. The price alone for the right class of card, and avoiding buying a cheap knock off from a less than scrupulous seller, I figure waiting 4 days at least for the card from Amazon themselves is better than chancing spending the same price on what could possible not to be the correctly provided card type or size. Something I've seen happen to many people buying memory either through sellers or on ebay.

I got a month before I'm due back at the PT and if I haven't deteriorated, stayed the same or even slightly improved, the PT says he will discharge me from regular check-ups for now with the exercises I have been given for my shoulders.

PT today

Well I have my PT appointment in less than 2 hours time which marks my first of two therapist appointments this week. Tomorrow I have another therapy appointment at the main hospital which coincidentally charges for parking in the disabled car park. That's if I manage to get one of the limited disabled spaces as my appointment is at 3.15pm just around the beginning of visiting hours so there is a massive increase in demand for these parking spaces at that time of the afternoon. Originally I had a 2.45pm appointment which meant I would have to be there not long after 2pm, an hour before visiting starts, that was more likely to have an disabled space at this time. Unfortunately my appointment was put back two days and moved half an hour later.

I will have to arrive even earlier than I would normally need tomorrow in  case I have to park out-with the disabled area, generally prior to receiving my first blue badge I generally had to park at the farthest out of the car-parks our hospital has and walk into the main entrance from there. At that time it took me around 15 minutes (originally) to about 30 minutes that it was taking me to get to the hospital itself prior to getting my first badge through.

So fingers crossed I will get a disabled parking bay tomorrow as I have a long enough walk in from the entrance to the PT department and another from the reception to the OT's office.

As my hands are beginning to hurt again and I need to try to eat something for lunch and take my second doses of medication prior to leaving for my appointment at around 2.30pm I'll sign off here.

Tuesday, 21 February 2012

Wish it was Friday

I really wish it was Friday already, I can tell you, I've got the Physiotherapist tomorrow at 10 to 3 in the afternoon, this time only 2 weeks between appointments. I've always thought that stupid, given my degenerative condition not much improvement can happen in barely 2 weeks. I've had no real improvement since my initial assessment in December so shortening my appointment from 3 weeks to 2 weeks wasn't a welcome move for me. Especially given it's the day next to my Occupational Therapist's appointment at the other larger hospital which is on Thursday (changed from Tuesday/Today) at 3.15pm. Also that one means paying parking to park in disabled area if I can get a spot then as this is smack dab the start of afternoon visiting hours which I know is hard to next to impossible to get a disabled spot due to the major influx of visitors for the start of visiting time.

As for the Physiotherapist deliberately making my next appointment the day after (at that time) my OT appointment for some reason which I don't look forward to at all. At least in January I had about a week long grace period to recover from my OT assessment till my PT appointment. Any appointment, but most especially one to the hospital given the long journey and long walk into the PT department, is exhausting for me not to forget painful as well, so I like some recovery time between them to y'know recover!

So needless to say I will be glad to see Friday arrive, and fingers crossed - if I could manage to cross my fingers which I can't currently given the degeneration in them - that they go back to not separate weekly, or at least a day or two grace between them and more importantly back to three week intervals at least.

If nothing else the cost of travelling to both hospitals on a fortnightly basis and any parking charges is a good reason to want them spaced further apart both in appointments and from each other.

Thursday, 9 February 2012


So my Dad has been speaking to relatives who know of disabled people who have had walk in showers in upstairs bathrooms and can't figure out how the OT told this morning that they don't.

Leaving me with two options, move house to a place where there is a downstairs bathroom or attempt to get planning permission from the council to install one. Both very expensive options that are beyond our grasp.

I believed a split level shower is just a fancy say of saying walk in/sit down shower in one of those little cubicle's you see in all the advertisements.

So, I'll just have to see what my OT @ the hospital says. Maybe she'll know how a 'split level shower' is different from a walk in shower that has been installed in many an upstairs bathroom in my area according to those who actually had it done or know someone who has.

Knew It Was Going Too Well

I knew things were going my way a bit too much, after months and months of struggling I finally had my Occupational Therapy assessment last Tuesday, she sent an urgent fax to the OT from the council to come see to the adaptations I need to continue living independently.

It's gotten so bad that I haven't able to use my over the bath shower that the OT had installed for me just after we moved into this house about 8 years ago.

So both she and OT at the hospital say I need a different shower that I can walk into, the hospital OT called it simply a walk in shower the OT today said I needed a 'split level shower' given the degree of my disability now due to the degeneration of my lower limbs.

Monday, 6 February 2012

Another Wasted Day

Well only half a day or so this time. After waiting in on Thursday all day at my brother's for his new modem to be delivered and it was a no show, we were there early again today to wait for it's replacement to be delivered. Brother phoned BT at lunchtime and found that what he was told on Friday about it being through today was wrong and it wouldn't be here till tomorrow. So he phoned us and we came home about 1.30pm.

So early day tomorrow and goodness knows how long a wait for this delivery if it actually comes that is. Then on Wednesday at 2.50pm I have my physiotherapist which tends to be brief thankfully now that I have had my assessment. 10 minutes at the most, takes me longer to struggle my way down the long corridor to and from the room my therapist is situated in.

Thursday, Friday and Monday the schools have in-service days so all three of my nephews will descend on us at before 8am in the morning and stay all day till their parents pick them up after school at around 5pm.

The Occupational Therapist from the council's social work department, strangely the same one who came to assess me several years ago and had my now unusable shower put in for me is the one doing the assessment once again. She is coming at 11am on Thursday as well to see me the OT at the hospital faxed through an urgent fax about getting this OT out to hopefully get me the aids/help around the house that I badly need now.

Then on Friday at 10.20 am I have an appointment to have my tooth extracted.

All in all a very busy week. Next week thankfully I have no appointments and am clear until two weeks tomorrow when I am due back at the OT at the hospital on Tuesday the 21st at 3.30pm.

Friday, 3 February 2012

Filling Day and New Blog

Well, I had my filling done and had my teeth scaled and polished. I also got the results of my x-ray on my tooth. My dentist suggested an extraction so I am going back next Friday to have my tooth extracted and a dentist from the dental college is being brought in to do it as there is something awkward about the tooth which means she needs expert help to extract it.

I also posted my very brief intro for my new blog Invisible Me where I will post more well thought out and written posts on my life as a disabled person living in this dire time for ill/disabled within the UK. Not up to the eloquent blogs and postings of such disabled bloggers as Sue Marsh and Bendy Girl but at least it will be honest!

Thursday, 2 February 2012

Toothy Thoughts

Tomorrow I return to the dentist's to see if my tooth will be refilled or extracted. I went to my check-up yesterday and told my dentist that I have two missing fillings. One in a tooth that keeps loosing fillings regularly and the other I believed was in a tooth filled last check-up time.

The dentist said the hole/chip was in the tooth next to the two that were filled together last time but looking at my trouble tooth she thinks that it is too deep to successfully keep a filling in place so might be better to extract it. Something I've been secretly wanting for a few years now, as a have had to have it refilled at least 4 times in the last five years or so and the last twice it took more than one attempt for the filling to stay in.

Wednesday, 1 February 2012

Again With the Goals

Well in October when I briefly saw the OT at the hospital she asked me to compile a list of my top 5 'goals' I wanted to work towards through therapy and aids when needed.

I hate these goals.


Because I can never come up with anything and have no legitimate idea what she wants me to say exactly. When asked yesterday at the 90 minutes assessment I went through all I could come up with was regaining control of my personal hygiene. She asked for other goals and after a few minutes of sitting blankly staring and scrambling mentally to come up with another goal. Any other goal but finally had to admit I couldn't think of one single thing presently as my mind was totally drawing a blank.

So again she wants me to think and compile some other goals for my next appointment which should be sometime in the next month.

I've goggled, I've searched all the various health related blogs and forums I visit, but still drawing a complete blank on that front.

I'll just have to ask her what goals is she continually asking about. I was referred to gain help with my seriously degenerated condition from my specialist. I knew I needed help either through the use of aids, therapy or probably both to help me regain functional independence which I no longer have having to rely heavily on my Mother as my carer on a daily basis.

I can dress myself, if I wear 100% stretchy clothes which don't require me lifting my arms too high and can get on and off using my one relatively 'good' arm. I can with struggle make my own bed which really only relies on me tidying up my duvet over my mattress. I can't however change the bed clothes just straighten them up when required.

Yes, I can use our hoover, just because we bought the lightest one we could find which I can use sitting down on my bed to hoover the limited carpet area left inside my bedroom.

But that's about it. Showering, hair, cooking, making drinks ... etc., etc., etc., require some-else to do the actual work for me.

So apart from helping me regain the ability to take all aspect, or most of them anyway, for personal hygiene onto myself all I can think of was gaining the ability to maybe cook a simple meal rather than only being able to make myself a very very simple snack. Which is my current ability.

So apart from hygiene, cooking and making myself a hot drink that's about it for goals that I can think of. All important to daily tasks. Also help with doing heavier shall we say house keeping tasks might also be required along the way but apart from those I draw a blank. I'll just have to ask for examples of these apparently important goals as I have no idea really waht she asking me for.