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.
