FLOPPY ISNT ALWAYS A RABBIT

The Occupational Therapist came again. I can't remember if I mentioned last time, but I don't like her. She has no empathy and therefore thinks everyone has her beliefs and her finances. Maybe I didn't make myself clear enough last time but she brought me different sized handles to try for using cutlery, it isn't everyday cutlery that is a problem, the problem is turning my right wrist towards my mouth. She also told me about 6 times if I buy the size of handle she thought most appropriate not to put them in the dishwasher! If I could afford 1 where would I put it? The OT presumed I had got a dishwasher and when I said I hadn't got one, she just said a deflated oh. Another case of non-empathy I thought to myself, but she has arranged for a physio to see me so they can sort out the wheelchair, let's hope the physio listens more to me and what I am saying, not how what I am saying relates to their circumstances
Even though there were personal differences, the OT did focus my mind, the last visit made me realise that the present level of disability was permanent and this visit made me look at what I need. So a fold down table for me to eat my meals from instead of a tray on my knee and use the lap top on has been ordered and should be here this week, also we have bought a tumble drier [thank you Irish Lottery] because I can't get outside, the only problem being space so we have had to put it in the porch.

I have received a date at the beginning of next week to have the low dosage chemotherapy. The only downside is that I now realise it will not not make me feel better just hopefully prevent me getting worse. I then have to have a bone density scan in a few weeks but hopefully that doesn't involve needles of any sort.

The district nurse has been twice this week to change my catheter but the chemist has not sent the new catheter and associated items. That is not surprising since the local pharmacy has changed hands from a small private concern to a large chain. The chain has supermarkets which seem to only sell brand names and if you mention an item or special offer that has been advertised the answer is always 'this branch doesn't stock that item'.

So getting a prescription delivered is a pipe dream. I complained last week about non-delivery of medication and the necessity of certain medicines when I was told I should order the repeat prescription by phone, not online. Why have an online service? I have sent an email to the people who maintain the site, so I will see what their response is. There is the choice of GP surgery or chemist so all the site needs is another choice of delivery putting on the site. We shall see!

Anyway back to the nurse, she may come again today with all the bits and pieces, if the chemist still won't play she will try again tomorrow.

As to the future, when my mother does go into the care home, we will have all her furniture to dispose of. One item of which is an electric rise and recline chair, and, as I have difficulty sitting upright, it might be useful to have it re-covered in a different colour so it matches my living room, which is NOT BROWN. We have had no indication of when the move might be.

The nurse eventually was able to collect the things she needed a week later then she originally intended and so was able to make the change albeit a week late!

I am really fed up of gradually falling to my right hand side when I'm sat and it takes a lot of tiring effort to stay upright even though I now have the table I mentioned before.

Tomorrow I go for the chemotherapy, apparently I will be there about 5 hours, but why do people [my daughter and Alan] think someone should be with me? I am taking my Ipod that I am charging up now and my nintendo which will be charged up as soon as I find the charger!

So more on the hospital day and being a pincushion on the next update.

FOOD FOR THOUGHT

The MS Occupational Therapist came out to see me last week and the only positive sounding thing was amazement at me not having a wheelchair. An option that I have now come to see as my life-saver. The only problem is of what sort, I cannot wheel myself due to lack of strength, and my carer isn't allowed to push because he has just had a heart attack. I know that I can have one on long term loan from the Health Authority [a wheelchair not a carer] but do they only supply the sort I can't use? What would be ideal is a powerchair, even though they do look like a Robot without the tracks, the seat turns 180 degrees so no more 3 [30] point turns and with a joystick control, I would not not have to grip the handlebars and hold in a lever to move. I know what I want but I would also like to know how to afford one. They range from 3 to 6 thousand pounds.

My main concern is the concrete steps and me somehow being able to get outside! The OT is putting the wheels in motion for me to have a stair lift but that is inside, the Housing Authority may think that it isn't viable to install a ramp system and recommend I move to a level access accommodation, either a 1 bedroom flat or a 1 bed bungalow. Moving in itself wouldn't be objectionable to me because there is no community spirit in this neighbourhood but its the thought of leaving behind the garden; and the décor inside the house which I have spent at lot of money on bringing it up to a decent standard. This house had been totally neglected for about 50 years prior to me moving in, all the hard work and costs involved I would be reluctant to walk away from. [OK ride away from]

I'm sure the OT was trying to help when she started pointing out features on the laptop that she had decided would be useful to me. I was very restrained and didn't ask her if she often told her granny how to suck eggs. I keep smiling to myself about the restraint I used.

Anyway the OT is calling again next week so I shall see what is happening. She asked me to consider moving, and I have considered it but need more information, and to be told of all my options, to come to a decision.

I have, however, realised that all the things I have read and been told all amount to the same thing, I will not improve, treatment stops me getting worse, but there is no cure only treatment to make it stand still. Why had it taken me so long to put all the pieces of information together? Probably because despite the consultant showing me a brain he insists is mine on MRI scans, in reality mine has long since left the planet, as anyone who has known me a while will agree.

This is only a short piece because I feel so weak and tired at the moment.

So see you all later.

ONE WEEK AS YOYO {UP AND DOWN, UP AND DOWN {yawn, yawn}]

Hello friends! It is day 3 of the steroids so I decided I was maybe fit enough to go out for a drink. I did and I discovered they hadn't had as much effect as last time. I have only slept for about 4 hours over the past two nights in total so planned to not have a shower this morning to give me time and energy to apply some make-up. Best laid plans etc.!!!

The 20 minutes I saved myself was wasted trying to fit the new type of 'discreet' mini urine collection bag I was trying that wouldn't be so obtrusive and therefore allow skirt wearing again. It didn't work like [what did I expect?] the Velcro fastening bands were obviously designed to be used by people with two working hands so the 20mins saved was used on trying to thread the holding bands onto the bag and trying to get the Velcro to grip the band together without also gripping my skin! In the end I used the new bag but put on my leggings for speed and convenience.

This made me half on hour later than I had arranged to meet Alan, so I was trying to answer his frantic call whilst finishing getting ready. Fun.

I ended up meeting him late wearing no make-up and feeling totally worn out. I had been looking forward so much to this outing and having the opportunity to dress up, so I wasn't very happy with the result. I enjoyed the lager and the company but I had not realised that the discreet bag was about 4 times smaller than my usual bag and therefore needed emptying more often. Seeing a lump on my thigh getting larger every second was disconcerting to say the least, I spent most of the time trying to cover my leg with my coat and reaching crawling speed to the toilet to empty the bag, which was difficult as I had to try and balance whilst doing the emptying.

So it was an enlightening outing although not relaxing and has given me a few pointers for the next time I venture forth. Wearing leggings was a good idea in the end as they are a dark denim colour and so emptying mishaps did not show too much! But I learnt some new coping strategies like not even trying to do anything intricate or delicate with my right hand, it only causes accidents no matter what I am trying to do. I have learnt previously that for the sake of saving feet I must not try handling a sharp pointed knife in the wrong hand, a puncture hole through my toe is not funny or healthy.

When I was given the last round of steroids I had been warned about the non-sleeping effect so that didn't come as a shock, but discovering that I am only allowed the course every six months was disheartening. Well feeling fit for 1 week every 6 months was better than nothing wasn't it? But when this time I only seemed to have 1 day of relief instead of 5 I was very discouraged. I felt so drained whilst we were out that when I saw a customer using a supa dupa powered wheelchair I fixated on it, and knowing that my mobility scooter is too heavy with my present muscle weakness and slow reactions I realised that I too would probably be permanently in a chair like that in a years time. Therefore feeling really under the weather combined with the steroid failure has led to a deepish depression. In fact the none sleeping last night was time spent crying and searching the web pricing up power chairs.

So now I've finished this course and am hoping to be able to get some sleep. I think the moral of the story is learning to pace myself better e.g. getting dressed up OR go out NOT both.

Today has been a mixed day, either I can keep my balance but after a couple of yards the muscles feel so weak that I feel like collapsing where I stand; and the next hour it can be difficult to stand at all, I feel myself falling forward and obviously spilling my drink, plate, whatever and can do nothing about it. I have done a lot of cursing this morning I've called myself swear words I don;t even know.

I've just been to the toilet and got involved in a weird roundabout situation with the door which decided to open as I grabbed it [logical] but I was grabbing it to stop myself falling over, now I am sat safely ensconced on the sofa it is funny but was frightening at the time.

So I think it s about time I found a distraction or something else to obsess about – how about family history? I heard that can become quite absorbing and do you anyone else who dreams about it? I think the dreams are due to my bedtime reading being genealogy magazines. - as I said obsessed!!

The next outpourings from my melted brain will be after I have had a good sleep, if possible. AND WILL SOMEONE PLEASE LET ME KNOW THIS IS REACHING PEOPLE. My personal therapist does realise I need feedback and is givng it me when able - For that I love her - I am so glad we met at that Barbecue.

NEEDLES, NEEDLES & MORE NEEDLES

Day I typing. Now it's 8 weeks after the operation and the mind is still not up to full power and balance is a big problem. I need to use both handrails to navigate the stairs both upwards and downwards, and walking on carpet with shoes or slippers on is virtually impossible. I tend to drag my right foot so footwear tends to stick to the carpet pile and makes me trip.


The appointment at the MS Clinic is still a couple of weeks away and I can't wait! Will medication make me feel better? Will I be classed as fit enough to have the low-dosage chemotherapy or will I be having to endure daily injections? Will I have had all the tests before Xmas for nothing, and have to endure them all again because of the time lapse?

Day 2 typing. The fatigue is making life so difficult that even typing this has been taking too much effort, hence the long delay. Add to that the other factors of family life and you have a perfect recipe for brain retirement, and mine has with no warning.

I have also had the first catheter change which wasn't as bad as I expected [that phrase seems to be my mantra!]. This first time was done at the hospital but future changes every couple of months will be done by the district nurses. So I will have that to look forward to.

Day 3 typing. There has been a 3 day gap and now I just about feel able to finish this. I went to the MS clinic yesterday and all the tests were worth it, the consultant told me which sort of MS it is. Are you ready for these long words? It is called - Aggressive; Secondary Progressive; Remitting, Relapsing MS. (SPRR) Basically, every relapse [which is happening now] will leave me a bit more disabled every time. So the consultant's aim is to stop the present relapse and therefore reduce the percentage of disability which I will be left with.

The only drawback is to the treatment is being a pincushion. First though there are the steroids, but before I take them I have to be infection free, so its to the docs with a urine sample and waiting for the results, then the 5 days worth of steroids which were wonderful last time even if they did stop me sleeping. I felt normal, well whatever passes for normal in my case.

After the steroids I will be waiting for an appointment to have the type of chemotherapy [low dosage] the effects of which will be monitored by regular blood tests and, the consultant asked me. had I understood what the side effects were? I said I had, but being a glass half full type of person, I didn't mention to him that I had only skimmed them, I have read them fully since and if I believed that bad things happen to me I would be worried. It can cause hair loss, heart damage and liver damage aswell as discolouring the urine. But lets not dwell on those. what is more frightening is that if neither this nor the follow up treatment of possibly daily injections don't stop the present relapse. I will be a permanent wheelchair user in about 12 months time. [Well that's better than colliding with the ground, or at least threatening to, on a regular basis like now].

So at the moment I am feeling a mixture of emotions and very edgy. Thank goodness that the plasterer who has been doing some work in the house on behalf of the Housing Department was not a 'jobsworth', I was in no mood for anybody to say 'cannot do this because of …..................' In fact I don't feel like being a nice person at moment it takes too much effort, so I apologise to anyone [especially Alan and the dog} that I may offend until my mind is more rational.