Do I or Don't I

Cher_Alumni

Hi @Topkitten

I'm glad you had a shower yesterday and have had a chair delivered.  This is good positive stuff to focus on  Let's hope chasing the OT and social care proves equally as fruitful!! Let us know how you get on and I hope you have a lovely Thursday.

chiarieds

Hi @Topkitten - I'm pleased to read you seem a tad better. I'm writing because of your difficulty walking, & wonder if you have any indoor mobility aids other than sticks. I know this is probably something an OT should be looking at, but, if any would help, some are not too expensive.

I use elbow crutches outside (& used them inside for a short while after a fractured hip). Personally, I just couldn't 'manage' a stick(s), & found elbow crutches gave me much better stability, as well as alleviating my back pain a little. Some cost just £11-12. See: https://www.completecareshop.co.uk/mobility-aids/coopers-crutches/

There are also walking frames....the ones you lift up with each step are OK, but not great if you have balance issues. The ones with wheels are good, depending on your floor covering. Anything which helps try & maintain your mobility & independence is worth looking at, if you haven't already. Please see: https://www.completecareshop.co.uk/mobility-aids/  for some ideas.

Ross_Alumni

@Topkitten

I'm happy to hear that a couple of more positive things have happened recently and I keep my fingers crossed for you going forward  

Have you had chance to see any of your favourite bands live in the past?

janer1967

@Topkitten pleased you have had few positive outcomes with care and your chair 

As mentioned maybe get some aids to help with walking I recommend the wheeled Walker as they have the seat which you can use when you get tired 

Have good day 

Topkitten

@chiarieds & @janer1967, Ty, as far as aids are concerned it is difficult to see how I can use anything other than what I already use. I used to use a pair of Fischer sticks and still use one (normally left hand) but I had to stop using 2 because I woke up at 2am one morning completely unable to move my arms and had to wait an hour for them to work so I could call for help and 3 hours for them to go back to normal. What seems to have happened is that by using the sticks and putting pressure across my shoulders in order to relieve pressure on my legs I have exacerbated the neck issues. Where I used to have 1 fused disk (due to a rupture, not slipped), now I have one fused and 2 more ruptured. I have a frame but the leg pain is so bad I still end up putting too much weight on my arms and then the second set of pain kicks into high gear. In fact the only pain free part of my body is the trunk from hips to armpits (excluding some muscle issues in my abdomen, fortunately infrequent). I have various handholds, a wet room and a frame for the toilet to avoid bending as much as possible. Also I have 2 wheelchairs, an electric scooter and a Motability vehicle with hand controls and a hoist but these are seldom used as I am not able to use them except outside the property and I am not on sufficient medication for pain control.

@Ross_Scope, I haven't been to see a named band in a long time. I did go to a local festival for a few years when I lived nearer to it but the only known name was Suzi Quatro who was there because her son was performing. As a teenager I saw Hawkwind, Slade, Thin Lizzy, Suzi Quatro, Slayer, Amon Duul II, Cockney Rebel and a couple of others almost all locally, plus was forced to see the Bay City Rollers by a girlfriend, lol! Unfortunately both my ex-wives weren't interested in music. My son has been to Bloodstock once or twice but I was too ill to go.

TK

Topkitten

Oops, sorry @Cher_Scope, missed the reply. Ty for your concern and I hope things settle a bit before I start trying to sort out paperwork and other stuff.

TK

Ross_Alumni

@Topkitten
You've seen quite a few big named artists there, some of which are from before my time so I'm not overly familiar with their work, but I'm glad you were able to see them  

I hope that some day you'll be able to go back to a show, if you want to of course. I'm itching to get back to them personally

Topkitten

@Ross_Scope, unfortunately I never will. My prognosis is to deteriorate until I cannot walk at all, or even stand for that matter. Then I will spend the rest of my life in bed or being hoisted in and out into a wheelchair while I can still sit. There is no reason for this really because even the specialists have no idea why I am in such pain and I am gutted that I have only found out about Scoliosis surgery recently which, if it had been successful 10 years ago, would mean I would not be crippled now.

TK

Ross_Alumni

@Topkitten

Sorry to hear that, hopefully someday there can be somebody who can help you and accompany you to places you currently want to go to but can't. Have you ever considered a befriender scheme? They can work for some

Chloe_Alumni

So glad you've got your chair @Topkitten! I hope that makes you a bit more comfortable.

Topkitten

Much @Chloe_Scope. I will look into such things @Ross_Scope but I am getting close to the limit of pain I can stand so I don't know how much longer I have. It was a temporary solution at best and I had to come up with it myself, GP was and is useless because they wont put ANY effort into things.

TK

Ross_Alumni

Hi @Topkitten

Yes do look into those things, I think they could be beneficial for you. And I'm sorry about the poor care you've received, have you ever tried to change your GP?

Cher_Alumni

How's things today @Topkitten? Let us know how you are 

Topkitten

@Cher_Scope, don't know yet, only woke up at 2 pm this afternoon. Still waiting to see how things settle down.

TK

Tori_Scope

How are you now it's been a few hours @Topkitten? 

Topkitten

Sorry @Tori_Scope, I didn't get back on yesterday. I did ok yesterday and the care is helping. The new chair is ok but the material is a little uncomfortable with the heat but this morning I woke up with backache which isn't something I get much of and last nights nightmares were particularly distressing,

TK

Cher_Alumni

Nice to hear from you @Topkitten

It's a long time since I had a nightmare thankfully.  They can take some getting over can't they?  I'm glad the new chair is ok.  Do you have much planned for the rest of the day?

janer1967

Glad you are using your new chair maybe now the weather is a bit cooler the material will be better. Maybe you have back ache as you are getting used tio the new chair it takes a while to settle when using something different

Have a nice weekend

Topkitten

I hadn't thought of that @janer1967, I'll keep it in mind.

The problem with constantly being on opiates @Cher_Scope, for me anyway, is having nightmares almost every night. Mostly I'm not too bothered but sometimes they are very nasty and last night was bad. Oddly, before the opiates, I almost ever remembered any dreams I had, just used to wake up sometimes a little anxious and couldn't remember why. Opiate nightmares though are considerably longer in experienced time, much longer than most dreams. My guess is that opiates cause a deeper sleep.

No plans for today except to pop out for milk and sugar, unfortunately I got the milk and forgot the sugar, lol! Still, I need to get coffee too and that means a different shop, so I'll probably go tomorrow. Other than that just watching some John Wayne films on TV. Can't beat a good black hat / white hat film.

TK

Cher_Alumni

No you cant beat an old film on a day like today.  Enjoy your viewing with your unsweetened coffee