Get Up & Go - - - Went.

Stages of recovery seem to have gone in cycles.

I have gone from initially not wanting to sleep, to waking up twice during the night, then once and latterly sleeping through  and feeling well rested.
However, during the last few weeks I have had periods of  being awake during the night and as I am more mobile during the day find myself totally wiped out by 8pm and going to bed to rest before "lights out". One evening last week  I had a shower at 6pm, went straight to bed and had the luxury of a meal in bed!

Last week also was the on-set of a "swimmy" head and headaches, I had my new glasses checked out and all seems in order. I  found that I couldn't manage shops and busy places.  I have been to the Doctor who was very supportive and did the usual checks which showed slightly increased blood pressure, a full blood test was arranged to see what the cause of the lethargy could be. At my recent eye test the eye pressure was found to be slightly raised which meant that a referral to hospital had to be made.

This week, w/c 28th March, I have three appointments at Harrogate Hospital: a field vision test, a pressure test with eye drops and physio: Unfortunately these are all on different days, but it does mean that I can rest on the days in between. This morning I felt slightly unwell after the field vision test: swimmy head and a bit off balance. When we were leaving to come home I met one of my initial care team who told me that "I was looking good".
If only she knew how I felt.

Half Full . . . Half Empty

I have always tried to look on the bright side of things, no matter how bad circumstances may have been at that time.
A lot has happened to me and my family in respect of our health, and with me personally, however, the stroke is something which has happened to me, but has affected everyone.

My father would always ask: "how's that arm doing?" I would simply reply "fine" and try to show him what I could do to reassure him. I would tell him that everything was O.K. and that if you were to look around there are people far worse off than me. He would go on to say that whilst he applauded my sentiments they didn't help me to get better.

To get through something as life changing as this you have to have a half full glass and be really positive. What is the point of giving up or giving in? There is a lot of life to be had, you have to make your own way and be strong to overcome the obstacles that are thrown your way.

I was told only a couple of days ago that "I was upbeat about it" - what is the point of being any other way?
I have been given a second chance at life and am going to grasp it and enjoy it. My way of thinking about things may have altered, but it is perhaps the stroke that has made me more strong and determined.

I was recently asked by the physio what now was really important for me to be able to do. I didn't hesitate and said that I would dearly love to be able to move and hold out my right arm. I was advised that no matter how much weight work that I do in the gym it won't aid a speedy recovery. So we have decided to concentrate on re-gaining useful purpose to my right hand. Of course I am disappointed at this, but, one step at a time. As my father would always do: Listen, understand and move on. Don't dwell on the uncontrollable.

Whilst I have my role models, I have become the role model for other people that I know. If I can turn this experience into something positive for others then I'm pleased.

Retirements

This last two weeks have been somewhat of a roller coaster for us.
My husband decided to retire and has had two presentations and I returned to work for the first time in nineteen months to formally receive a retirement presentation.

We had a small gathering to mark the occasion and family came to stay for a week. The house seemed busy again after being largely on my own during the day over the last months. The help that was offered was gratefully received as it gave my husband a welcome break form all his extra chores.

So it was on Week 2 that we first had to learn how to adjust to this new chapter of our lives. My husband had only been used to really seeing me for any length of time at the week-ends and now was the time to discuss what I needed assistance for. To enable my further recovery, l welcomed the extra exercise sessions that we could do - guided by the physio. However, I tried to steer him clear of helping at every opportunity. I would get wound up and say to him that he was not aiding my recovery only inhibiting it.
Ouch - not fair I know and hopefully he will pass comment on this.

The complete reverse of this would  be to let him do everything and get really complacent. That would only be an abuse of all the help and treatment I have been fortunate to receive and then lose everything that we all have acheived together. I need to be able to do stuff and keep focused on my recovery.

I felt selfish when I asked to go to the shops with him and I know only too well that he could do it far quicker on his own, but after such a long time I really wanted to look at supermarket shelves and see products. Occasionally I had done on-line big shops, but there is nothing like seeing products first hand.

Another "wind up" is going into a cafe or such like and see my walking stick being moved for "safety". This is my aid and I know where I want it and where it is safe.

It still frustrates me seeing him do a lot of what I should be doing, but at least now we have the time to discuss and plan.

I am sure that we have both had to bite our lips, but we are copers and that's what we do best.

Weddings and Going Out

In the space of ten months we have four weddings and a Ruby wedding to celebrate.

Our eldest son and friends have been married, our neice and youngest son are getting married and we are also celebrating the 40th anniversay of friends of ours.
Lots of retail therapy to look forward with my friend who knows how to dress me, but the downside is going to new venues and meals.

I so want to be normal, "not stand out in a crowd" and not have any fuss made. Quite a tall order!

Some of the venues I am familiar with but others I do not know at all. The one thing that I get most "worked up" about is managing food. As I still only have the use of one hand eating meals can sometimes be problematic.
At our eldest son's wedding, five months ago, I wanted the reassurance that my husband would sit next to me on the top table. Not protocol I know, but I didn't want anyone else cutting up my food and looking after me.
I am sure that people understand my difficulties but I just want the comfort of assistance from someone who knows and understands my difficulties.
This poses the question of selfishness of only wanting assistance from my immeadiate family and in particular my husband who has been unwavering in his support.

If we go to a restaurant, bistro or cafe I often take the easy option from the menu, rather than food that I really fancy. This is not only to stop the need for having food cut up infront of other customers but also because, even now after twenty months, my teeth cannot seem to chew food as they could. I can take ages with a piece of well done steak so I tend to eat food like this at home.

Tiredness

I have never given in to this temporary state and have kept working away to try and get better.

I am extremely fortunate that I still receive 'physio and have built up a good relationship with the lady who has been treating me post-discharge. We laugh together and occasionally I get overwhelmed and get tearful.
I work hard at my homework with my husband who has been exceptionally supportive, but when he was working it became difficult as I would be tired and un-responsive when we attempted the exercise routine in the evening.

Tiredness is an on-going problem and I have come to realise that I have to pace myself. On a good day it is very tempting to go mad and try and do all manner of things and then I suffer for the next two days, and must rest.
Two or three months ago I had tremendous pain in my legs at night, I tried to sleep with a pillow underneath them, took painkillers and when nothing seemed to cure this convinced myself that I had a thrombosis.
(Every little thing that seems "not the norm" is a worry until I find the logical explanation) I had been over-doing things but not heeding the physio's advice of doing leg stretches: standing on the bottom stair step with only the toes on the step and then rocking the foot upwards and downwards to create a stretch to leg muscles.
For every new thing that I try I have to find a way of relaxing that joint/muscle etc. afterwards.

I try to do a little daily walking but if I overdo it my legs totally seize up which means that I literally cannot put one foot in front of the other.
If I get mentally tired it causes the inability to think straight and at times I can experience a "knocking" sensation in my head.


It can also cause my speech to be slightly slurred and then I get a little upset when people cannot understand me. Instead of asking me to explain they will look to the person I am with - - more irritation!
I used to start conversations:- "I am sorry, but since my stroke . . .". I don't do it as much these days, people must be aware that we work hard to combat these difficulties, and now I will make a joke of it.

I remember Thora Hird playing a stroke victim in Alan Bennett's "Lost for Words" and how if she couldn't remember a word would try word association - believe me it does work!

Clothes and Shoes

Initial days out seemed to invariably mean a trip to Matalan where I could purchase bigger clothes inexpensively.
I increased a full dress size but it could be two depending on the make of clothes. I didn't like the idea of being a full two sizes bigger but had to accept the fact.

I bought what I thought to be a rather trendy short length duffel coat, something I told myself would be very useful when using my wheelchair. All seemed ok but I soon began to realise what a mistake I had made. It was heavy and without a lining, this made it very difficult to put on and then have to swing it over my shoulder was nigh impossible. I had to put my bad arm in first and then lay the rest of it over the back of the settee to manoeuvre it! The only good thing about the coat was its colour!!
I continued to add to my wardrobe but was very careful in my purchases after that.

Clothes had to be easy to get on and off, particularly in a "need to get to the loo quickly" scenario. Leggings with trendy tops seemed to be the answer unless I had the occasion to be glammed up, which was a rare occurrence.
Chosen wisely, a few clothes could create many different looks, but I always wanted to be up to date if I could: Tee shirts with cardigans for summer and with chunky knits for winter

It is hard to comprehend but my feet have decreased a half size and now was the real great need to get flat, shoes that would give support. My right foot can roll and I have a "foot up splint". This aids my walking and means that I can place my foot straight. I wear it around the house with trainers and whenever I can outside.

I now shop at a few well chosen places and have got to know the assistants who are only too pleased to offer assistance and advice where it is needed and occasionally let me take things home to try on rather than get all flustered in changing rooms. To have the confidence and value people's advice makes everything a far more pleasurable experience.

I quickly began to realise that I must get clothes and shoes that I could manage by myself:  No belts, zips or laces and a coat with a hood. Yet something else to consider on what used to be a pleasurable experience, so natural and not problematic.

Tolerence, Intolerance and Fit for Purpose

I have never considered myself as disabled - but admit to it being more of a temporary state.
I would like to think that this and my sheer determination and doggedness to combat this wretched state has got me to where I am today, 20 months afterwards.
It has been a huge learning curve for all of us and this is what this next post tries to address.

I can now empathise with the less abled and see all manner of things from a different perspective. Disabled toilets are my big passion and I could quite easily give an outburst if I see the use of them being abused and am not stopped! Has anyone ever thought that the disabled do not have to have something outwardly physical wrong with them. I find it all quite infuriating when normal people will just "nip into these toilets" to avoid a queue. At a recent visit to a local M & S I saw a lady trying to use the disabled loo and my how she looked quite put out when she found it to be occupied, so she then went into the mother and child facility.

I still find busy places with lots of people hard to handle. Lots of people all coming towards me can throw me off balance so I literally have to stop dead in my tracks. Again, at the same shopping trip two ladies who were deep in conversation almost walked into me, but even worse they were oblivious to the fact. It took a gentleman who was patiently waiting for his wife to notice this incident.

I want to be normal and to so must try to do things for myself. Getting dressed, making food, cleaning, bits of shopping, pushing a supermarket trolley, pegging out clothes, writing letters to name a few. I want to and need to do these things to not only aid recovery but to feel "fit for purpose". People around me obviously want to help and I hope that they are not offended when I decline their offer. I have to understand that folk have my best interests at heart and that  if they assisted it would be more speedy, but to coin a well known phrase: "I didn't get where I am today by sitting back and letting others do for me". I do not do it to offend or upset but to keep up the road to recovery and normality.

Before the stroke I had at times, what could be a quite demanding job and was involved in one or two local societies and I have mentioned previously, along with a small nucleus of folk did a lot of fund-raising for the local theatre. Suddenly to go from "all to nothing" has been very hard - not to have a finger in all the pies! I tried to keep my interest with the theatre, but this too is very demanding and so it has been with tremendous regret that I have had to take a back seat.

What now? Well I have recently had a "taster" session with the WRVS trolley at the hospital, but have had to concede defeat. I simply haven't the stamina to walk the distance and could not manage all the thinking skills that are required.One day I will give something back to the hospital that has looked after me and my family so well.

I am currently writing this blog and another which gives a insight into my childhood memories:  http://woodcroftfolk.blogspot.com/
This, although takes a long time to write, is giving me a sense of purpose and real achievement.