Just to say hi everyone

Oh Santosha, so sorry not been back sooner, it's been one thing after another, DWP, health, house falling apart… Anyway, I hope when you read this it finds you as positive as you sound from your messages. Lots of hugs for your warm wishes, and the same to you too! You sound the same generation as me, and with pretty much the same lifestyle now! Staying at home, not seeing people etc. Though I'm guessing that's the same for pretty much lots of us in this forum, forced into isolation by our disabilities. It's grim, but anything we can do to lessen the impact, like going out for fresh air etc can be a help.

That was a brainwave of yours phoning the secretary threatening to escalate a complaint! Brilliant idea, I'll keep it in mind for the future! I hope you finally got the prescription ok? That's a worry if the chemists find the meds difficult to get hold of - I've heard several news reports of that sort of thing lately. Around here the chemists will deliver it to your door for free (they do for me), have you asked them if that's possible? Not sure about Boots but the little chemists do it. If not, is there something like a voluntary organisation around there who would pick up the meds for you? Or get in touch with the local councillors, they should know someone / some organisation who could help. There are others around here who would volunteer to pick up shopping too. It's probably worth ringing around if you haven't already.

As for smoking, good job you packed it up but I know it's hugely addictive. Our generation everyone was doing it weren't they? Even as kids… I was really lucky, when we were 10 we went on a school trip to an agricultural show nearby, and there just happened to be a display of a bloke's lungs in a case (his actual lungs!) - he'd died of lung cancer and his lungs were black, and there was a pot of nicotine tar standing nearby. Got me just at the right age! Never touched a cigarette. But I know others who smoked simply to lose weight etc.

My demon was drink, which we also did from an early age, didn't we? There came a time in my 20s when I could hardly go a day without a drink. So I can really sympathise with your predicament about vapes. What I did with alcohol was gradually cut it down over time, like over a year or two, start having less and less until I was used to the lesser amount. I still drank occasionally for quite a few years, in much smaller amounts, but now I don't drink at all.

So you might find that a better approach Santosha, to cut down gradually. It's very good you're on vapes rather than cigs, that's been a big step for you. Maybe patches would be a good way to go, they probably give you a lower but steadier dose than the vapes which probably give you an instant hit. But patches would be safer long term, once your body has adjusted to lower the cravings. I've heard vapes can have all sorts of other nasty chems, and if you've got lung problems they probably aren't a good idea to breathe in.

I've not heard about bubble breathing, have you tried it now? Is it any good? It's a real shame about the oxygen, they should really make these things more available. I've seen you can buy little emergency oxygen cylinders yourself (if you can afford them, ha, ha). Might be worth it in an emergency maybe?

I do hope the meds are working now. Enzyme replacement therapy I know how you feel, I haven't eaten meat for years out of principle (or is it just pigs?). Pigs are really very intelligent and sensitive creatures. I haven't actually seen Babe, I'm afraid it would make me too sad! It's the sort of thing that keeps me awake at night, worrying about poor animals being slaughtered. But I think with your therapy, if there's no alternative you'd best bite the bullet, they are already dead so there's nothing more you can do about it, except maybe try and campaign for kinder alternatives (which you can't do if dead!).

Must go in a min, things pressing but will try and get back much sooner next time. Just to add, the best way to keep your bones strongish is to try walking, if you can. I'm assuming that's still ok for you as you can go upstairs (bar broken ankles!). Outside in the fresh air is always best, good thing your exercise bike is there + a very good idea too. I wouldn't overdo things, just slowly build up with time. That's what I've been doing.

I can imagine how you're feeling with nefopam, my doc prescribed me with melatonin to knock me out + help me sleep with these tremors, but it suppresses serotonin and makes tremors worse if you take it several days in a row, so it's single nights only! The tremors still aren't brilliant. Searching on the internet I've discovered it could be caused by nerve compression rather than parkinsons or something, good or bad news I'm not sure but have a lot of the symptoms. But still got to wait until Nov to see a specialist (and then it's just a triage to point them in the right direction…) Ho hum life goes on. But handwriting etc is becoming impossible.

Best be off, back soon. Take good care of yourself + let us know what is happening. Hope you're starting to improve with all the treatments + life's becoming a bit brighter. Lots of hugs xx

Hi Santosha, following on from my message to you just now… yes well your ankle doesn't sound too brilliant, sounds rather like mine, which is all swollen at both sides and painful to walk on. Realistically I'm not sure physio would be the best option, it sounds very much as though an operation on your foot would be better. Physio sounds as though you could be being fobbed off, like lots of us, because of age + they know full well we won't be economically productive. They've agreed to operate on my foot, or did until the tremors gave them an excuse to cut me off the waiting list "until the tremors have been sorted", which I'm afraid might be never. What I'd do in your shoes (oh dear, no pun intended!) is go along to your first physio session, if it's pretty soon now, and ask them to tell you realistically how much of an improvement they could give you. But bear in mind sometimes they paint a really rosy picture, so quiz them about whether you'll need to continue with the wheelchair etc after said "improvements". If they can't guarantee you'll be able to walk again afterwards unaided, if they say something like "let's just see how it goes" I'd quiz the docs again about having an op. One thing that got things moving for me, by accident I saw a young doc back around Jan, rather than my normal doc, a young + sincere bloke who got things moving, agreeing to refer me to Oxon. Might work with you if you see another doc when yours happens to be on holiday or something. When you see them, emphasise the pain and how much you want to be mobile + back doing something productive in work (whether you do or not). Really the NHS should be there for everyone, not just the young + productive, which they appear to have been doing several decades now. I actually came across a memo some years back, put on the internet by one of the southern hospitals, advising staff to restrict knee operations to those under 30, believe it or not. I bet this is sort of practice is well-known by those in the know.

Brilliant work you've got yourself a bungalow - yippee! Sounds lovely. And your dogs much give you so much company too : ))) What breeds are they? Bet they cost a packet with food, vets though! But… you mentioned your sister in the past tense Santosha, has she passed away then? I've got 2 brothers, one miles away in the south, who's been recovering from cancer - not seen him for years as he can't travel far + neither can I. My little brother lives near + is big good help but has autism so it's really we try to look out for each other. But it's not the same as having a real chat…

Oh dear will have to speed up, time goes to quickly. Have you applied for PIP Santosha? You might be eligible if you haven't, especially with the mobility component. Could be a big help with the bills. Sounds as though you're making really good progress with the vaping. I would really try to switch to patches if you can, I think you can get them on prescription + you'd then be eligible for oxygen. Sounds pretty tough if you can't have oxygen if you're vaping - almost like they don't care if you kick the bucket! Probably not that, but a way to force you to give up. I'm pretty sure the docs have been running a scheme here to give a free bag full of fruit + veg to anyone who gives up smoking, you never know, would be worth a phone call.

As for the prescriptions, oh dear they certainly make people jump through hoops don't they? Almost like another fending off tactic to keep costs down. Hope you're sorted now + the enzymes, vits etc are kicking in. I wouldn't worry too much about the adverse affect of enzymes, as long as there aren't chemical additives to make them work (which though you never know), all the enzymes do is help you digest food, so shouldn't give side effects. Vit D etc certainly sounds a good idea, especially if you can't get out in the sun too much, though your dogs would certainly appreciate (lots and lots of!) time outdoors. I get your point about not being able to have weight-bearing exercise, it's a bind, although one extra point to drive home to the docs that you really need an operation on your foot, before your bones become too fragile + you become even more disabled (and a bigger burden for them!).

I'm just one year older than you Santosha, so we're certainly the same generation! I'd best go now, been writing the best part of an hour! Take good care of yourself + let me know how you get on with everything. Try and keep your spirits up + don't give up with these docs and everything. I'll get back as soon as I'm able. Lots of hugs for yourself + your fluffy friends : )))) ****