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?!!!

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!!

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.

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.

Confused

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.

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.

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.

Why?

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.

10%

Well I spent over an hour going through an assessment with the Occupational Therapist today. Among the millions - well it felt like it - of questions I had to answer I had a few exercise for my hands (which the therapist seems to be concentrating on) including spending around 15 to 20 minutes going through the hot/cold water basin exercises for my hands.

Results of the machine used to squeeze to measure hand strength I scored very low with both of my hands. The therapist showed me the chart showing what my number count should be for my hands and I have less than 10% of the strength I should have.

So I was given exercises to do twice a day in hot/cold water alternatively as well as three exercise to do in sets of 10 during the day at least four times daily.

The therapist is faxing an urgent - urgent for our social work/therapy departments anyway - order to have their OT to visit me again at home to see alternatives for the current overhead shower I can no longer use even with help. As well as look into placing arm rails on both sides of the staircase within my house and also to see if something can be given to me to aid me getting in/out of bed which I have a lot of trouble with having to depend on my bed's metal bar on the headrest to propel me into/out of my bed and to help me sit up etc.

I will be getting my next appointment in around 4 weeks sent out within the next few days.

Panic Stations

Well we've just spent the last 20 minutes hunting down my letter with the correct time, department and therapist for tomorrow. As this is my first Occupational Therapy appointment I really need it to make sure I get to the right area at the right time tomorrow at the hospital.

Finally after that brief panic I figured my Father had moved the letter and not told us, needless to say he had forgotten all about moving it let alone where he had moved it to, I just took a chance figuring as it was sitting under my Kindle on my bedside cabinet since it arrived that he might have moved it to where he has habit of moving my Kindle when he mucking around with the stuff on my cabinet.

I must admit not to being looking forward to my OT appointment, mainly for two reasons:

1. I'm suffering from a cold and the freezing temp - snow expected by this weekend - isn't helping. So I'm feeling more listless, stiff, exhaustion than normal.
2. This appointment being the first can last up to an hour like my first PT appointment just prior to Xmas and also it's at the main hospital which results in a long long long walk in from the main entrance compared to when I attend my PT. Even though the room my PT uses at the clinic is quite a distance from the reception it's nothing compared to the distance I have to transverse when attending the main hospital for appointments.

More Good News

After my 'good' day yesterday with news on my health/situation I received a letter from the hospital. Initially I thought that my specialist appointment at the Rheumatology Clinic had been delayed/changed but no, it's finally my appointment with the Occupational Therapist. It hasn't been forgotten, and definitely a load off my mind. I was going to bring it up on Monday when I have my next Physiotherapy appointment to see if he (therapist) could help me chase up the OT appointment for me as I was beginning to worry I had been forgotten.

Only bad news is that it's on a Tuesday at 11.30am, good time frame for me, but unfortunately Tuesdays and Thursdays are the two days I help out my parents with looking after my youngest nephew and take him into nursery at lunchtime. Also Tuesdays tend to me when I have to pick up all three boys from schools because both my brother and his wife often have after school meetings to attend.

I'll phone Monday morning to see if I can get the same time frame but on Monday, Wednesday or Fridays.

Appeal Update

Well I got a letter from the benefits people at the Department for Works and Pensions. Short and sweet again but good news this time.

We have looked again at our decision.

You made an appeal against a decision about being placed in the Work Related Activity Group. We have looked again at the facts and evidence used to make our decision. As a result we have changed that decision.

What happens now.

Your appeals will not be sent to an independent tribunal as the decision has been changed in your favour. 

The latest letter was dated the 6th of January, so after waiting around 3 months total since I received the first results of my assessment in early October.

So for once good news for me. After the DWP decision maker decided in December that he/she would stand by their initial decision of placing me in the WRAG, it's been reversed by the higher level DWP before being passed along for the independent appeal. I know I got a letter less than a month ago from this benefits department who would review my original evidence provided with the ESA form as well as the points I raised on the letter I submitted in October after initially being put in the WRAG. With only my appeal letter and evidence given in my initial assessment claim I am being placed into the SG (Support Group) as I asked to be looked at for eligibility in my appeal letter in October stating why I thought I qualified for it, the DM in December stated I didn't provide enough evidence in my appeal letter and intial form for this and it was being passed onto the appeal process. Re-assessment by the DWP/Appeal section at DWP have decided that the evidence is enough to warrant my claim on SG.

So, for the moment I can breathe easier and concentrate on the therapy I am currently undergoing.

Assessment

Well I'm not long back from the hospital where I had a 45 minutes assessment with my physiotherapist. First major shock ... it wasn't the female therapist I saw at the hospital who I was supposed to see in conjunction with the occupational therapist I was referred to at the Rheumatology Clinic.

This time a unknown male physio went through a assessment which took 45 minutes to do. I was a bit uncomfortable to be honest I was expecting the female I saw at the hospital who was supposed to be my therapist along-with the OT who brought her into the case.

He asked a slew of questions and did a routine examine which showed basically what was already known. I had no swelling around any joints but that doesn't say I don't feel pain non-stop from them. At least there was questions about pain levels which I stressed were always on the very high end of the scale.

He asked if I had seen a OT, which I said I was referred to initially and it was her who brought in the physiotherapist which triggered the referral to the appointment I was attending but I hadn't got an appointment through yet for the OT. This I find disturbing as I was referred to OT not PT but this is the only assessment/appointment I've been to.

I was given three exercise for my left shoulder which was badly affected and little to no mobility and told just to keep doing my other exercise given for my spine/RA joint problems. So the PT is concentrating on my left shoulder joint and regaining mobility with it.

My entire body is hurting all over now and I'm in even more pain and more exhausted than I was before I went.

I have an appointment three weeks from Monday with the same therapist so see my progress with using these exercises at 3 to 4 times daily in sets of 10.

But then the same problem occurs my other joints are able to be manipulated easily by therapists/doctors but that's not to say I can do the same moves independently and without pain. There seems to be this belief that if there is no swelling it's OK.

I explained how my hips/back/knees were worse now than before and my severe loss of balance even worse than before and the therapist explained that my body has been dealing with RA putting pressure on these joints since day 1 and now 12 years on this is be expected. So that means my knees/hips will never get better than they are now which is quite a degeneration on when I was diagnosed 12 years ago.

He asked if I was working! I doubt an employer would take me. I don't sleep at night which I explained, wake up more tired, stiff and in pain that the night before, and it takes at least an hour to an hour and half before I have able to get relief from the extra stiffness/pain and go back to the continual stiffness/pain that stays with me all day. Standing/walking puts a lot of pressure on my back/hips/knees which make my pain worse which he accepts and understands. While sitting isn't as bad as the pressure is off these joints I can't sit comfortably for long and have to use my leather padded adjustable chair.

All in all a mixed result for me. I would a whole lot better if I would get my OT started as I belief that that will be more important the PT for my condition. He started asking what my usual day was like but I got as far as getting up and the extra stiffness/pain wearing off to allow me to go out if I need to go shopping but he didn't ask about tasks like cooking, making a hot drink, and so on that the OT mentioned, the only daily tasks he covered was getting up out of the bed when I explained my difficulties with that and showering which I said I needed help with as I couldn't get in and out of the bath safely, and help with my back and other parts I couldn't reach/do myself - the same with drying myself.

Must be the OT job to help with these tasks as they weren't covered. Only the showering problem I have was covered. Along with my problems getting in/out of bed.

Also very disappointed as the original therapist I was supposed to see was a specialist with fibromyalgia as well as RA and he didn't ask/mention anything about my Fibro and the problems it causes. Only my difficulty sleeping was covered because he asked about my tablets.

Getting Ready

It's almost 2.30pm still no sign of the City Link delivery and I'm off to get ready for going to my physio appointment at the hospital.

Glad to get home afterwards. Hopefully both my delivery will have arrived and my three nephews picked up by the time I drag myself home again.

I'll be glad when Christmas Eve arrives and all shops are closed, all presents wrapped, all shopping in and I can finally relax for what seems like the first time in forever ............

Frustrated

Between lying courier services who say they attempted delivery two days running when they didn't and I have at least 3 adults to prove so and relatives who expect me to drop everything and act as an unpaid taxi service I am frustrated and totally fed up.

Nippy November

Well it's November already, how this year has just flown in.

I am still experiencing a lot of shoulder pain (and elsewhere) and am finding using my keyboard/mouse very painful and slow.

Usually I touch type and don't actually look at my keys now typing on one hand only has me looking at the keys to find each one I need, nearly impossible to do as several of my keys are faded and show no letters to make sure I'm using the right one. Making me too slow in creating any posts, not to mention very painful when I do attempt.

You will also note misspelling and wrong letters ... so on not making sense in my previous posts. This is because I am struggling through and posting only to find errors later when I reread them. If it's not glaringly obvious and readers can still understand what I'm trying to say I haven't bothered editing the post ... so sorry for that everyone.

I have finally remembered that I have a budget tablet sitting next to my keyboard, in front of my hard drive tower, which would be easier to type on as the small built in keyboard in my case is best used one handed. Also using my one fairly decent arm/hand/shoulder I can type out more concise and understandable posts. I tested this theory tonight while waiting in my car for my eldest nephew to return from his guitar lesson and found while typing posts this way is slower than I am used to, I tend to create more concise well thought out posts which have little or no editing needed to 'fix' them for posting.

Also the on screen keyboard I'm using suggests words as you type and for long words that I repeat it makes the process of typing out posts a lot easier and a bit quicker.

So hopefully I will be posting more about my views on all thing I consider pertinent as a disabled woman who happens to blog. I'm currently working on a post on being a disabled blogger and how I see the internet - and blogs/forums for disabled and ill person - as a positive thing for people who can find themselves cut off from the outside world by their disability.

Functionality

Well, happy Halloween again to all of you, I have been to my rheumatology clinic today. Given the effect of my RA and Fibro on me I was given a steroid injection into my left shoulder which I can move making me left side of my upper body unusable.

I am currently typing one handed as I have been told not to use my left arm/shoulder for a few days at least. Not that I could use it anyway.

I am waiting for appointments for both an occupational therapist and the physiotherapist, both of whom I met today after my appointment. I have no functionality which means I can't wash/dry myself, take care of hygiene, cook, make myself a drink or basically do the everyday tasks people do everyday.

I am looking at a lot of therapy over the next months, it could be a couple of years before I have even enough functionality to take care of my own basic needs. Then the therapists intend to help me tackle my extreme fatigue. Just to allow me to take care of my own everyday needs independently.

I was given two new 'comfy' crutches to replace the one basic one I've been using for years. I am due back with my doctor in six months instead of the usual year I've been attending.

This therapy is just to help me live independently as much as possible so that when I am alone I can live independently in my own home.

Hopefully my letters, both therapist and the clinic, will come through before the 14th when I have my first WFI as part of the WRAG group.

It's been made clear to me by the therapists that I am completely unfit for work and am looking at months and months of intense therapy to allow me to take care of daily tasks like dressing, hygiene, cooking, eating and so on. Including any special adaptions to my home I might need and any special aids I will need to start beginning to use.

Just now I am learning to use two crutches and it's like learning to walk all over again. I had the same problems when I first starting using 1 crutch.

Hopefully the DWP (and ATOS if they get involved due to my appeal) will see sense and not add to my intense workload as I learn to live with my now officially recognised regenerative condition. I am relieved to be honest as my future was scary as I can't even wash myself or cook for myself let alone everything else and without my Mother I would be in big trouble. Now the therapists have promised to help me gain the skills to help that future not seem too impossible.