my own WWW – Wanderings With Wayne
Today, Thursday, was another frustrating day and I think that it should be labelled ‘I should have stayed in bed day!’ but silly me, I didn’t. Why? But I am getting ahead of myself and have to deal with an interesting day yesterday first.
Got up, good start, and looking out of the window all seemed well so I dressed accordingly and set off for the Wednesday morning walk group. Things were fine until we left the library and started walking then the rain came, and the wind, and more and more of both. Eventually after about 30 minutes we again reached the sanctuary of the warm and dry library, soaked through. Those of us brave/stupid enough to have walked in the rain sat in soaking clothes to enjoy coffee and drip dry. An awful lot of drips were present!!! went home, dried off, changed ready for afternoon and 10 pin bowling.
Fooled once again my neighbour and myself set off on the walk into next town and along the way, heavens opened and we got soaked, again. I just do not learn. We chickened out and jumped on a bus for the last 5 minutes of the journey horrified to find that the less than 1 mile bus ride costs nearly £3.00, I need my bus pass quick!
Anyhow the bowling went pretty well, I managed 2 sticks and 4 clearances during the 3 games and on 1 of the games came second out of the 4 of us. Must be getting better or luckier.
Got back home to find a letter from a health agency that works on behalf of the PIP department. Excited I thought that maybe the 16 week delay was not true, or I had lost 16 weeks last night ( anything is possible now days). Neither, it was a letter to tell me that some health professional wants to come and talk with me at home to continue the assessment process. I know that I should not moan about PIP people coming round, especially after having moaned about their 16 week delay but why do they insist on coming, when I should be at my therapy group session on a Tuesday morning!!!!!!!! Does dementia effect my day…. yes…. but not as much as you coming and disrupting my schedule. Aaaaaarggggh!!
Now what on earth am I supposed to tell them on top of the 40 BLOODY PAGE form already sent in with letters from doctor, psychiatrist, care co-ordinator et al. Is this just a way of making sure someone stays in a job as a ‘healthcare professional’?
Whoever decided on the first 3 letters of assessment certainly got that right.
Sorry just a little frustrated by this whole thing.I posted a moan about this on TP and it was suggested that I ask them to change to date/time. Seeing as this is mentioned in the letter and a 0300 number included, it seems to be the thing to do. Simple…. don’t you believe it!
Thursday dawned and off to CST group in the hope that I can get someone to telephone PIP for me and also to find out about why Tuesday people ignored the last Thursday homework about pictures. I again helped with getting teas and coffees done, then we were introduced to yet another different person who had not even been here last week but apparently will be for all the Thursdays from now. As I often say, ‘we will see’. She was quite terrible and if I am going to avoid public character assassination, which I am, then enough said but she really should not be working with this group/type of people.
Jailhouse Rock, where and when are we, what’s in the news, quick exercises then I asked about Tuesday. Got an apology but no explanation except the group leader says she will mention it to the Tuesday people (sounds like it could be a TV series name). We then spent the rest of time, excluding another round of drinks and a tired version of Elvis, talking about food. Good subject for a practical but naff in theory. We discussed what we have in our cupboards to produce a snack and then did a plan and budget for a 2 course meal for 4 people within £15. It seemed that most things were by magic already in the cupboard otherwise the budget would have been smashed to bits but it was ok and quite funny listening to the arguments about what else to have with roast lamb and what fruit to put in a pie. Forget about the fun and games over how to make custard!!!!!
After the session the group leader made the call for me and failed badly. Despite having a number to call and what seemed a very valid reason for wanting to change the appointment and having a healthcare professional speaking on my behalf, we got nowhere. It was left that someone from this ‘PROFESSIONAL’ organisation would call me back later to see what can be done. The whole reason for having someone make the call for me is to save the anxiety and misunderstand of dealing with it myself on the phone. Total failure! Even bigger failure is that no-one bothered to call me back anyway so not sure where I am now????? so where I am who knows, what I am is very wound up and close to exhaustion and ready to give up!!!!!
I feel a bit victimised because I am TOO YOUNG to have dementia so must jump through more hoops and because of trying to be independent am just treated as if all is ‘normal’, well its not!
From here the day just got worse and more difficult as I became more and more tired and confused.
I wanted to get a folding laptop table and my local Argos had sold out and did not plan on restocking so I decided that as the next nearest store was further on the bus route than the CST group meeting, I would bus instead of bike today. Got off bus and went to session then afterwards I went back to the stop to continue on my journey. Still thinking about the failed phone call I waited for the bus, and waited and waited and waited. After about 3 of the timetable slots had been missed and by now cold and wet, again, I asked the driver of the next bus that came along where was my bus. It seems that they do not come along this road at the moment as there is a detour in operation. Confused as I got off at this stop this morning, I walked back to the previous stop. At last my bus came but just flashed his lights at me and sailed on by. Love you too, flashing lights are lovely but meant nothing to me. I looked at the timetable at this stop and saw a notice that explained for this week this stop is not being used, I need to get the bus in another road. Luckily, because I fear getting lost when out on my bike, I carry a local A-Z so looked it up and went there. Very very confused and sure that even without dementia I would have struggled with this one.
So off the bus at this totally new unexplored place and thankfully the entrance to the shopping centre is right opposite where I got off the bus. Into the centre and I wander around a bit trying to find a McD’s to grab a snack and use a voucher I carry around. Could not find one so gave up when I bumped into Argos. For some reason the computer screens here were different, or at least seemed so to me, than those at my local store. Struggled to find the code number for the table I wanted and then thought it was £5 more than when I looked it up locally???? my mind must just be scrambled today. Queued up then paid with a credit card as I felt the card machine would be too much for me just now. Got my box and out I go. Wander around a bit trying to find where I am and realise that I must have come out of a different door than the 1 I entered so am now lost unable to locate bus stops. I went outside and did a circuit around the whole outside of the shopping centre knowing that I must eventually get to the stops. This worked and when I gratefully fell into a seat on the bus, knowing I am now only 1 change from home, I relaxed, a bit.
Spent the journey trying to work out what words I could use to post up about today, especially the phone call, without every second word being censurable. I gave up thinking as there is no way to sum it up without the odd **** sneaking in!
Well just sod the world I want to get off!!!
Catch ya later