cleaning and shining: After the shock of GSC... - PMRGCAuk

PMRGCAuk
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cleaning and shining

Valentina1
Valentina1

After the shock of GSC diagnosed came diabetes Then chest infections. am a heap of carrier bags from the pharmacy these days. pain gone. Huge relief. I am gaining a shiny clean home. Furniture been moved room to room selecting items for display here know not there but here. The hill to town now defeats me and I get breathless quickly even my voice changes. Dodgy mobility late morning starts. From being a very active walker and sociable person to a person who doesn't care for lots of noise. Has this happened to any of you.? I am concerned about my travel arrangements overseas Airports etc., Hideous times. Cant decide what to do. I have 2 further weeks on 60mgs preds then depending on Bloods will be reducing again I feel I am being taken a little more seriously this time I have a regime to follow. My. the 10mins with GP better. Pharmacist at Tescoe the best. I watch you all and read Fantastic information always and the very act of shareing it helps. Many thanks all.

26 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

A lot of changes in life I know, but just take things as easy as you can, and do what you can, when you can! I know it’s very frustrating to have life turned upside down, but it’s not forever!

Have a read through of this - if you haven’t seen it before - healthunlocked.com/pmrgcauk...

If you are travelling, whether by plane , coach, boat or train request assistance - that’s what it’s there for, and most helpers are very nice, and very helpful.

No need to be concerned, just do a little more planning beforehand and let others take the strain!

Good luck.

A number of people on here extoll the virtues of airport assistance. It really does take care of all your worries.

It does sound a bit like you are making the rookie error of mistaking the effects of high dose Prednisalone for real energy. Do sit down and have a cup of Camomile tea. Our muscles aren’t very resilient. We’ll be here for you as you progress through this illness and the obstacles.

I only discovered the effect on my voice when I tried to sing to my grandson and produced a frog croak. It’s improved somewhat after 3 years, still not Pavarotti though. Take good care!

Oh my gosh IS THAT WHY I SOUND THE WAY I DO!! I thought my voice was breaking!!!!

Me too. I have to sing v quietly since I went back to choir - frog croak + hovering somewhere unpredictable between altos and basses. At least I can now reassure everyone that it may improve a bit eventually. :)

Aha! Mystery solved! I thought it was due to advancing age.

Meggsy
Meggsy
in reply to Meggsy

Is the pred or the PMR the cause?

PMRpro
PMRproAmbassador
in reply to Meggsy

In my case it was definitely PMR - or at least, the vasculitis associated with it. I probably have large vessel vasculitis that affected the blood supply to my jaw and throat/chest muscles.

Telian
Telian
in reply to PMRpro

My throat/voice changed as soon as I went on steroids, still the same at 4.5mg.

PMRpro
PMRproAmbassador
in reply to Telian

Interesting - but as I say, for me it wasn't pred, I wasn't on it!!

Telian
Telian
in reply to PMRpro

I never know what's causing what, just seen a senior physio that works directly with rheumie, as have problems with muscle strength, patchy numbness in thighs and back of knees and tingling that I'm told is nerve endings - but lately my extremeties are soo painful, as if I've got ingrowing nails in all of them, have difficulty picking things up with fingers strength wise and he says the lower legs each have much reduced reaction when he does the hammer test. Touching a tea cup feels as if I've scalded myself and my throat and tip of tongue feels burnt all the time - as if had a too hot drink - and latterly poor balance. Have been suffering with this for a while but thought it was blood pressure, had high for a while but added another tablet and okay now but still wander a little as if I'm drunk. The final test he did was me standing with my feet together and he held my arms with the flat of his palms, when he let go I merrily went over and he had to catch me. Reminded me of Del Boy in only fools and horses in that pub scene. At that point he said this is MS!!!! This is just a snap shot of what's been happening and I've to bring MS and Rheumie appts forward - bugger - I thought I was doing okay and findings reasons for everything. Also every toe and finger nail is very soft and split in lines all the way down the nails, had to cut them short until the weaknesses grow out - physio thinks it my be psoriasis. I thought I was being one step ahead by agreeing to move nearer to family - looks like I need to get a wriggle on....while I can....

Reply

PMRpro
PMRproAmbassador
in reply to Telian

Hmmm - and get a proper dxiagnosis and management plan. There is amazing stuff for some forms of MS now. All the best

Telian
Telian
in reply to PMRpro

Thanks PMRpro. Sorry what's dx - dexa?

PMRpro
PMRproAmbassador
in reply to Telian

diagnosis, sorry,,,

Telian
Telian
in reply to PMRpro

I will, think we've spoken before and I've been on MS radar for a while now with no DMD's prescribed as showing no obvious symptoms - even though I'd had positive brain scan, eye evoke test and lumbar puncture typical of MS - their logic was I was 'too well' and as already had another AI they would monitor for now. It was Prof D who referred me on saying how I was was not GCA/PMR.

PMRpro
PMRproAmbassador
in reply to Telian

Doesn't sound "no symptoms" to me!

Telian
Telian
in reply to PMRpro

I agree but they weren't as bad as now and I believe she thought I had enough to contend with getting over BC and the AI's - she told me I was 'doing very well' and would monitor for now. Have to admit I didn't feel as unwell as I do now so had to reason to ask further. With hindsight I now think is treatment for the prevention of symptoms coming on something I ought to have asked about. I hope to get a correct diagnosis and if treatment is necessary now take faith when you say 'there is amazing stuff for some forms of MS now'. I think it's in New Zealand or Canada? where they seem to be streets ahead, admit I haven't looked into it as I'm here not there.....

Meggsy
Meggsy
in reply to PMRpro

I think it was/is PMR for me too. Pretty sure, upon recollection, that it began during the five months of accumulating symptoms prior to diagnosis and pred.

PMRpro
PMRproAmbassador

It has taken a long time for my voice to get to a stage where I can get a note! And the range has gone - it won't be back!

Some details of what you are worried about travelling would help but, as already mentioned by the others, airport assistance is the first post of call. It makes such a difference in all sorts of ways. It saves you walking in a hot terminal, you don't get lost, it gets you seating in silly airports where there isn't enough provided, you get to use lifts instead of stairs or escalators and you are able to board first instead of in a rugby scrum...

I travel to the airport the day before so there are no last minute rushes and I start well rested. It helps to plan a long way ahead - though I imagine it is a bit late to add extra days, I aim to arrive 24 hours before I need to be there so I can rest and don't plan anything I can't duck out of for that first day.

And NEVER think, it'll be fine, I'll walk - take the lift they are offering!

Valnvaughan
Valnvaughan
in reply to PMRpro

I have booked airport assistance for my flights to and from Cuba. Excited....leave tomorrow with overnight near Gatwick to keep relaxed....extra Pred packed just in case. Booked a 4 location package and added an extra rest day at each location ( at a cost). Finishing with a week at a white sand all-in resort.

Hot sun , rum cocktails, a bit of sightseeing and dancing and warm sea.....just the ticket for January in UK. Also a long delayed Golden Wedding celebration.

Valerie🌴☀️🍸✈️🏖

Valerie!!! That’s wonderful!! Congratulations!! So happy for you!! I am sure you will have a fantastic time and when I think of what you have overcome!! You are a superstar! 🏆🏆🏆

All packed and staying at airport hotel ready for flight tomorrow. Thanks for your wishes......I will be keeping an email eye on the regulars to check your progres....good luck. Valerie🤗✈️🏖🍸

I find noise really bothers me. Retired early as I worked with children and one reason was the noise and confusion. My husband's tv noise sends me right upstairs. After supper I am shot for the day anyway. I tried airport assistance and at one airport I was told if they took me in a wheel chair I would miss my connection and I was better off to walk. But another time it really helped where I had missed my flight and they took us right where we needed to rebook. So 50/50 I guess.

In the UK that would be disability discrimination with unlimited compensation, if I recall that part correctly. How humiliating!

I once saw a lady in a wheelchair in the Business Class Lounge, she was dolled up to the nines sending the young man to fetch wine and cakes and thoroughly enjoying herself. He looked a bit peeved. Good for her I say!

Agree with all that has been said above, just want to say that assistance is also available at most staffed railway stations. Like airports have to be booked in advance.

I find it incredibly difficult to use the Tube these day even outside peak times, both stations and trains, and avoid it unless the alternative bus journey is too complex or slow. This is ironical in a way as I worked for many years in Transport for London Customer Services, mainly dealing with correspondence about the Underground, and the pension that they pay me makes about 50% of my income! I also don't like to be in a crowd, something that never used to bother me. I used to live off Oxford Street. Thank goodness I moved a few years before I became ill, as I couldn't bear to live in such a noisy crowded place now.

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