Just to say hi everyone
Hi everyone, it's been quite a while since I was here last, health got in the way of everything. A bit better now, just taking it easy. I'll try to come back whenever I can, but sending you all big hugs in the meantime + hoping you're all ok⦠xxx
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Hey there @FeistyPigeon my favourite avian community member, it's good to hear from you!π
Sorry to hear health got in the way, but it's good to hear things are settling a bit now. Please don't over do things. β€οΈ
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Hi @FeistyPigeon
Lovely to hear from you, please look after yourselfπ
I absolutely LOVE that photo btw!0 -
Thanks Bluebell, and big hug to you : )))
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Aw thanks Mary. We can always do with a big hug : )))
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Aw thanks Albus, and special coos (with flapping wings) to you! : )))
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Nice to see you @FeistyPigeon! Feel like it's been ages. Hope you're well?π€
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Yes it's been far too long, really sorry not being here more often Holly, the problem is the tremor seems to get worse after bending over a screen for a while, so I've really had to cut down being online, which is really frustrating <squark!> Baby steps at the moment, things are improving slowly but it comes + goes, and doesn't help got to wait another 6 months before someone qualified can even get to see me, so don't even know quite what is wrong, just that it can get pretty badβ¦
But hey, summer's here + hopefully will keep improving. Hope you're doing ok too Holly? All you kind Scopies, got to say it's been great knowing you're there in the background, gives us something to hold onto through the bad moments : )))
Best stop now, but will be back <coo, coo> xx
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Bless you, that's completely understandable. You have to look after yourself first and I'm pleased you're feeling a bit better. π I've definitely missed your coo's and flapping feathers lol. I'm ok thank you. The sunshine definitely helps me feel good! π€
Hope to see you again soon! Take care.
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Aww, nuffin' better than a good ol flap while having a good coo!
Thanks Holly : ))) Sorry been so long away again, it comes + goes, but discovered walking, or rather, strutting with attitude ; ), is the best way to recover. Take care of yourself too xx
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Thanks Santosha + logs of hugs to you too, how have you been doing? Glad you've been back, hadn't seen you for a whileβ¦ I'll try + be back as often as I can, it's a real pain, you get absorbed on the computer + then the health plays upβ¦ Hoping it's been after-effects of treatment they gave me last summer, not as bad now as in the autumn, but there're still bad times, won't know for sure until seen specialist next autumnβ¦
Let us know how you're doing now, will be back soon xx
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Big hug Albus : ))) Hope you're keeping ok too� Have to go now but back soon xxx
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Hi Santosha, so sorry I've taken so long to get back to you. I had a fall (a bit wobbly on my feet now), got a couple of bust ribs and DWP have been on my back too⦠But big big hugs for you, I can imagine your news was such a blow, you hear this sort of thing far too often. Makes you wonder whether it could in part be intentional, if you aren't economically productive you would be a lot less expensive if you were no longer around. It's most likely not of course, rather that they're just so short of cash + staff that they prioritise those most likely to recover afterwards. But it's well-known around here (south-west) that the older you are, the longer you're likely to wait between treatments. Some years ago I had a struggle trying to get a knee operation, waited several years, I was even told by one "helpful" physiotherapist "plenty of people your age do very well on crutches". When I finally had the op, the surgeon told me he hadn't done anyone over 30 (I was in my 50s). And I've seen memos put out by NHS managers to discourage operations on older people.
As for yourself Santosha, I don't know if you'd feel comfortable giving any more details about your problem + why they can't operate. Was it a top center you saw or just the local hospital? I don't want to put your hopes up but there might possibly be other avenues you could explore. In your shoes I'd ask for a second opinion in a top center like London (or somewhere nearer you if that's too far). You should be able to get patient transport by ambulance, if you don't already, they take you door to door, they're really good, even for long distance. If I could help in any way looking up specialists etc, let me know. You could always send me a direct message to keep it more private.
The double pneumonia must have been bad, you must try and keep yourself warm over the winter (I know the costs are so high). I hope you're well on the way to recovering from that now, thank goodness we've had a good couple of months of warm weather now. As for hospitals, you sound very much like me, my instinct whenever I come near them now is to run (or really waddle) as quick as I can in the opposite direction! My Mum was just the same, she was in and out for years and couldn't stand it in the end, I think a lot of us get like that. But we have to grit our teeth and try to remember they're there to help us, nothing nasty! It's a bit like being a pet and being taken to the vetsβ¦
As for myself, the tremor keeps getting worse, it's pretty annoying as things like using a keyboard + mouse are becoming difficult, and it impacts on your confidence, you become very self-confident about it. It's this year November got to wait for a specialist, but that's just the triage. So I will most likely be looking at waiting until next year at least to see what's wrong with me. I'm trying not to dwell too much about the longer term futureβ¦
Do keep care of yourself Santosha, don't forget I'm here to help if I can. I'll try and come back to Scope more often now the ribs are recovering, I'm more "walking wounded" than anything at the moment, and got to the point where I'm fed up trying to mitigate the tremor by keeping away from the keyboard, so I'll try and look out for you. Can't do emojis but lots of <hugs> and <hearts> too xx
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Great to see you @FeistyPigeon it's been a lot less avian without you around. Sorry to hear about the tremors, I can totally empathise it can get really frustrating! I hope the ribs heal up quickly.
Is there anything we can do to support you with the DWP issues?
And of course I'm sending lots of good vibes to @Santosha12 too. β€οΈ0 -
Very late reply but thanks Catherine : )) Hope you are keeping well too xx
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Aw thanks Albus, that's really kind of you : )) <coo, coo!> You should have seen the feathers flying when I tripped up!! I guess there can be downsides to strutting along with attitude⦠but what's a pigeon to do?
I won't go into too much detail about the DWP here, might be best to keep Mum (or in my case Mrs bird - squark!) for the time being. They're being reasonable at the moment, but it's been grinding on for far too long (on and off since last summer), seems never-ending with constant demands for more info. Not that they'd have anything to get me with, I've always been careful to play by the book. But will be in touch if they start playing me up, you never know with themβ¦
Hope you are keeping as well as pos too Albus + able to get out in the sunshine xx
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What??!!! And what's wrong with a little dive-bombing now and again, I'd like to know Wheeled Wagon - it all adds character ; )
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Hmmm⦠Maybe she needed cooling down??
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Oh Santosha, I'm so sorry to hear how you've been. North west is a long way from me too, so can only send you masses of hugs. You poor thing, having these genetic conditions is no joke. It must be scary not knowing when you'll get another infection. If you don't already, I would urge you to wear a mask whenever you're in a room with others, it's hot weather now and it's not nice if all you want is to be "normal" and sociable with everyone, but it's better than coming down another dose of pneumonia. If you haven't got a mask, get some P3 ones (they cut out almost all bugs). I get mine from Safety Supply Co (on the internet) + wear them whenever I go to the docs or hospital. I probably look pretty weird too as no-one else wears them, but it's much the best.
Not being told you had reactive arthritis is pretty dammed negligent, although it happens so often I'm really not surprised. What a good job you've seen your medical notes now, having an insight into what is wrong is so important, it can give you a head-start in avoiding problems, if anything can be done to avoid them.
At least it's good news there's a respiratory team to keep an eye on you at home now. And let's hope the pain relief is making a difference. But I do hope they get their act together and start giving you the enzyme replacement therapy. Staff being reluctant to take over because someone happens to be away is really not good enough.
Don't worry about not keeping in touch, come back when you feel up to it, not before, let us know how you're doing. Myself, I'm feeling a bit brighter now, ribs are recovering, the tremor's still there but more tolerable somehow (or maybe it's just that I try to shut it out of my mind). I'll be popping in fairly regularly to Scope, and there are lots of really lovely people here who'll be wishing the world you'll be getting to a more tolerable state of health soon. I bet you are an expert in EPI now! There's nothing like experiencing a condition to learn about it inside out.
All my best wishes + warmest wrap-arounds with my wings xxx
PS I've been told with my broken ribs, the best way to keep chest infections at bay is to do regular deep-breathing exercises. They've probably told you this already Santosha, but just in case (and if they haven't, I'd check with them first)
And have they given you some emergency oxygen as a back-up? It would be good to have around⦠xxx
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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 directionβ¦) 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
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Hi Santosha, lots of warm wishes and hugs to you. Sounds like you've been in a similar situation to me, feeling a bit rough with lots of medical + DWP stuff to juggle on top. I've had another rather bad spell, so with that and all the juggling been off-grid the last few weeks. Improved now, but I'd better take things easy, it can get quite frightening when the tremors are really bad, makes me wonder how much worse it could get. Doesn't help you read about all the nasty things you could have lol⦠There was a poor bloke in the paper the other day, only 67, they told him he didn't have Parkinsons, so he thought yippee! Then they said he's got something called CBD, would lose all his motor control and had only 4 years to live! :(((
Ok enough of that! So glad you've got through the review unscathed. It's been going on with me for over a year now, at times silence for weeks and then demands for evidence. The latest is they've demanded all my bank statements from 2020 and even better, are planning a long phone interview to interrogate me about it next week. Will be about the third or fourth interview now (lost count). I think they're really geared up to hounding people. But they don't even seem very well trained, they demanded info from a charity helping me (with threats to cut benefits if I didn't come up with the goods), and the charity was up in arms as DWP had no right to do so, so then I risked making enemies with the charity. And I've even had to explain to DWP how to read / understand bank statements, and then they still don't get it sometimesβ¦
Ok enough moaning! Didn't intend to! I really wanted to talk about your messages! (next message in forumβ¦)
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