PMRGCAuk

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Thank you everyone. I made it! I did some yoga and swam in the sea!

Dear fellow GCA pals,

I just wanted to say a huge thank you to everyone on this forum who has helped me since my diagnosis on 13th August. My world spun 360 degrees but its slowly coming upright again.

On 1st Sept I managed to get away on holiday! As a solo traveller I usually go on a yoga break as you meet nice folks, eat nice food and do a bit of bending and stretching whilst watching and listening to the sea - then you fall asleep! After GCA i couldnt imagine going to the garage never mind the airport! I am so so lucky to have a great rheumy and he cleared me for flying. I got myself a nice medi bracelet with cats paws on it and my Pred engraved underneath it in case I keeled over . I have my steroid card in my purse on an emergency card and a nervous but determined smile. Armed with enough Pred to sink the plane and diazepan (dont like flying) a walking stick to help easy access through the airport, just a small hold all on four wheels (extra support to lean on) I made it to a tiny village on the Greek island of Paros. As I had been there before and loved it - it is so so so quiet and peaceful - it was easy to slip into the routine - albeit it at a much slower rate because everything seems to have slowed down a bit now. I had the whole first day to myself. The man who owns the apartment got me some food (i had told him about GCA). Now all i had to do was to get to the beautiful little white yoga studio. No worries the teacher picked me up. For the first session I just sat on a cushion and breathed. Watching 6 other lovely ladies - breathing and doing gentle moves. By day two I could walk up to the yoga studio along the beach (9 mins), and do a couple of stretches but nothing with head down. By day 6 I managed some familiar moves I I've been doing for 30 years! A triumph. The main difference was that (and I dont want this to sound daft) bu my ego had gone. In the past as an x dancer I always wanted to look good. Now as I sat there with my moon face appearing daily (despite low carb no sugar) i embraced my chipmunk cheeks, little belly and enjoyed feeling like a little buddha. Day 3 I swam in the sea; not caring what I looked like in my old fashioned 8 yr old bikini - there were only about 6 families on the beach most of them Greek mamas and papas.... It wasn't all plain sailing. With the side effects of Pred I went through some serious mood swings, anxiety and panic feelings, my head over thinking, buzzing, burning, eye jumping so much that two Greek Adonis guys thought I was winking at them in a distracted manner, insomnia at 3 am had me sitting on the beach listening to the waves and stroking the local cats! (thank god for the gorgeous Paros cats)... it was like I was shedding layers of rubbish that I didnt need anymore as my blooomin temple artery stood proud on my head (which I have nick named Tina).

All too soon it was time to come home. All I kept writing in my journal that it was a good day despite GCA. I kept to a good diet - kept a hat on (22 degrees) all the time (a cheeky English lady type ) and made my way home. Okay Athens airport wasn't a breeze when the steward wanted to take my hand luggage and put it in the hold - but as I meditated on the plane counted my blessings. I am self employed so every day I cant work is a bit of a disaster and I worry about how on earth I am going to get back to anything like the output that I was doing - which was far too much. I have a diary full of commitments and projects that I have worked 20 years for coming up in the next 18 months..... I love what I do with a passion and cant give it up. Though not wanting to be self indulgent or take up too much of anyone's time reading this I am looking on the bright side and finding that the change it has made in me is surprising me and I like this different version of me.

Yesterday the consultant said I could drop my Pred down again in 2 weeks from 50 to 40....

Its day 32 now and its a good day. Thank you to everyone for helping me to get this far. Without encouragement from everyone on this forum I would have been too nervous to travel and I would not have been writing this.

Much love and healing vibes to everyone. x

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What a lovely post!!!!! Thank you for sharing! You did make me laugh! I am so happy you went and that it worked out so well! Your post came just in time for my departure to France on Saturday!!!!!! I will travel with a bit more openness!!!! Thank you!

BRAVO that despite the serious mood swings, anxiety, panic, over thinking, buzzing, and eye jumping you DID IT!!!!! I am so happy for you, proud of you and inspired by you!

Give Tina my love and welcome home. Rest now and enjoy those memories!!!!!

I am so pleased that you are going to France you will have a great time! GCA girls conquering the globe! Bon voyage!

💜

Hope your holiday works out as well, Melissa. Relax, drink wine and chill. Bon voyage, 🌸🌸

Many thanks!!!! Fingers crossed.

Fantastic. Such a boost of self confidence when you go solo with GCA isn’t it!

But next time maybe get assistance at airport - makes life sooo much easier!

Thank you. My little stick made all the difference to get me through queues and people were kind. But I might try booking assistance next time. I rather fancy a ride on one of those beepy ariport buggies!

You usually only get those in bigger airports, the smaller ones usually have a wheelchair with a very helpful “pusher”! But whatever, it really does make a difference - and you see the parts of the airport that others don’t!

We could start an unofficial GCA club - 'airports I have seen by wheelchair/buggy'... lol.

Now that would be another club everyone would want to join! 🤨

Is there much bigger than Chicago? Wheelchair there too!!!

ho ho ho wheelies in Chicago... now there's a sight I think we should all travel with a beautiful hat so that when in chair or buggy we can be serenity itself x

👒!

Yes and Changi in Singapore, wouldnt get a buggy on trains between terminals! Where most of the “pushers” are older than me! Always make me feel a bit guilty.

In fact only place I’ve been in buggy is LHR, and so impersonal there!

If they even turn up in the first place...

When I fly back into Heathrow J always feel I have to apologise to the other less able passengers - everywhere else in the world seems to manage it so much better and with compassion. LHR - not!

Last time I used the wheelchair option was in Orly.. As I was being wheeled toward a customs checkpoint, I was taking a 20€ bill out of my purse (this elderly Asian pusher was at least 20 years older and about half my weight). Well, the customs agent accused me of "looking like I was trying to bribe him, and to never do that again" Hahaha...

I know what you mean about the nasty ones, though.. I almost prefer when they put you on the golf cart thingy. At least you can strike up a conversation with the other passangers.

mmm I think I would feel self conscious in a wheelchair too... because you see so many people worse off than yourself - but a buggy would be great!

Though the walk at Manchester airport recently took me 3 times as long as it used to. Stick (paisley design fold up) one side and my trusty four wheel drive hand luggage hard shell case the other and smiling as others rushed passed me.... then they changed the gate number! Luckily it was only one more down but if it had been back the way I came then I would have been calling for any kind of chair from Easyjet; either that or the trim air steward could have put me on his wheelie case!

Exactly - that is why I request assistance. I felt so ill after walking from the carpark to the terminal at Munich a few trips ago that I knew I had to consider it - the distance plus the heat inside was unreal. The first time I actually did it was when we had a connection to make at Chicago - 4 hours sounds a lot until you remember US immigration! I find standing for long exhausting - I can walk further! - nor can I hurry and you can't risk having time to sit for a rest. I keep hoping for an electric buggy but the access to the gates hasn't allowed that yet! The other advantage was at Seoul, although the walk to the gate was short enough when we got there there were no seats but because it said assistance on the ticket we were taken down a level to the "holding area" for assistance passengers and seating!

That’s true, although I’ve always found the pushers to be friendly and chatty, maybe because it where I’ve travelled - Spain, Singapore, NZ mainly. Other places in UK as well, it just seems to be LHR!

LHR has a reputation! One it doesn't appear to want to live down...

Friendly yes, and chatty. Unfortunately the one I had last at Oslo Airport spoke nothing but Norwegian for the entire time to which I just nodded and grinned like an idiot.

You must. I booked assistance going to Canada 2years ago. It was hot O H and his dicky knee. Well worth it, whizzed through all the queues etc!

Hi Fieldofdreams, what a super positive post. I enjoyed reading it.

Thank you Primarose. x

Lovely, I was transported to the Greek Isles. Great achievement, nothing should stop you now!

thank you scats. x

Wow! Good for you.

thank you Mikb.

Thankyou for your lovely post ,l hope that the Pred .,tapering will be successful ,Good Luck!

Your words are very inspiring Fieldofdreams! Ahhhhhh.....to escape to a scenic, calm island in Greece and soak it all up, your way. I’m quite envious actually as I view daily picturesque posts on Instagram from family and friends all over Europe. Castles in Hungary, wine oveoominh the Amalfi Coast in Italy 😍

You are resilient and have prioritized your self care, and by sharing your experience you have reduced some of my fear of travel. Thank you.

I’m glad this shift you’ve experienced results in you feeling more settled, yet still resolved to achieve your goals over the coming 18 months. The forum of folks are here to help you navigate the rough waters, AND the celebrations.

Onwards and upwards,

Leslie

Hi Leslie, thank you so much for your lovely post. I hope you are able to travel too and grow in strength every day. I am 57 and believe the glass is only half full of champagne ... I haven't dared have a drink yet.... lol. Might leave that a while as I can wobble over all by myself on a cup of tea sometimes

Onwards and upwards exactly right. x

I really enjoyed your post, thank you Fieldofdreams.. It made me feel validated on several levels and it was fun to read.

I too, feel like I've evolved a little due to PMR, and I like myself better than pre diagnosis. I think it's due to all the clever writing that I read on the PMR/GCA forums. Love your attitude..

thank you Gaijin I am so pleased that you too are finding some positives. When I saw it written down by you like that I realised that I like myself better too. What a chance we have been given to really stand back and look at ourselves and then have time to evolve and change. When one door closes a window opens!

Thank you for that lovely positive post. I admire your bravery, I am further down the line with my journey but still plucking up courage to book a train to London to see my grandchildren. I will do it today! 😊

Dear ChrisMcT, go for it. Buy a snazzy stick, take good food with you, book train times ahead and a good seat. if you book far enough in advance sometimes you can get a first class ticket as cheap as normal or do the weekend upgrade.

Yes it's something I used to do on a regular basis, only takes 11/2 hours from Lancaster on the Pendolino, just spend the day there, I'm thinking of the strikes and engineering delays and husband on a short fuse, permanently and me on an even shorter fuse hopefully temporarily!

Oh gosh sounds like you have got your hands full. I am single and can please myself. its a bit frightening sometimes when you get sick but at least I can please myself ... after I have asked permission from the cats of course!

Really enjoyed reading your post but don't push yourself too hard. I have GCA and did that 6 years ago and the result was a TIA. So whatever your projects are pace yourself.

Gosh prunus, sound advice thank you. I almost said yes to something just now and then I read your post.... Its now a big fat NO! Thank you. I hope you are now feeling much better on your journey.

What a lovely read. Thanks. I could experience all you described. The waves, the sun, the cats. I like you was gearing up with projects and an over full diary. Ready to defect from the so called rat race to my self employed passion. Cut short in its prime and now in limbo. Still edging towards it at a much slower pace.we are on the same journey. Just in slow motion. Keep on and good luck with it. Say hit to Tina for me. X

thank you Singr. I believe you will get back there. Its a funny kind of limbo but I am seeing it as an opportunity. As someone on holiday said to me: fear = challenge = opportunity and that is what I think is happening to me. I didnt treat myself with too much kindness and my body said NO - but you can have a second chance if you watch it. Cigar Cigar (slowly slolwy).. as they say. good luck. x

What a beautiful post, I think you should be a writer and write an essay about PMR/GCA. I developed both last summer 2017 and it has been a bumpy road. I am now down to 4mg and terrified. Went to Portugal in May and had my steroids stashed in several different places in case they got mislaid somehow...! We never know what tomorrow will bring, but reading your post made me feel more positive.

Dear Stella, thank you so much. I am so sorry that you are having a bumpy road but down to 4 mg is amazing! I am glad my post stuck a chord with you. I am one of the lucky ones - no PMR and had an amazing doctor who spotted it straight away so I am counting my blessings.

Funny you should say about writing an essay. I kept a journal of my trip to Paros and I did wonder about writing it up.... I work in theatre and opera as director.... Maybe when I can do more time on the computer I will...... From looking around the internet the only real tangible thing to hold on to for me has been this Forum. None of my friends have ever heard of PMR/GCA, just as I hadnt and because the steroids give us a 'glow' and we havent got a plaster cast around us we dont 'look' ill..... Every day as you say is different. I had a shocking day yesterday after a good start; then insomnia at 3 am and now quite a good day - but bushed by 7pm.... lol. Time to sit and stroke the cats I think and listen to my waves relaxing sound box (I have tinitus which since GCA has been about twice as loud as before)....

But, the sun in shining after the rain here and its another day when we have had small triumphs!

Good for you! So glad the trip went well. It is wonderful when we really get to enjoy life. GCA/PMR make us really appreciate those times.

Thank you Lanakay; the change has been a shock, but as someone said to me change = fear = opportunity! Hope today has been a good day for you.

Hi and Well Done to you! - you are indeed an inspiration and good example to many of us who have moaned and groaned, with far less serious symptoms than you are suffering!

I gather you have the GCA alone? ( not combined with the PMR which I assumed was the norm?) For info. the figures I am now aware of are - for people with at least one of the conditions - out of 103 people, 3 will have GCA only - 3 will have GCA and PMR - and 97 will have PMR only.

What interests me also, is the 'profile' of the person who contracts these conditions?

I have both GCA/PMR and am considered by most people I know as someone who is always on the go, enjoys sport/activity/able to push myself to get things done/ forever feeling I need to catch up, promising myself I would then spend time relaxing, which I sometimes would.

Over years I was regularly late going to bed at night but didn't really feel any bad effects from it until PMR/GCA struck (out of the blue - no warning at all, a year this month!). Strangely, the year previously (Sept. 2016) I began another strange experience and that was Double Vision (which was corrected by SpecSavers adding a new prism into my glasses).

As a result of numerous examinations, inc. MRI of the head - No positive connection has been made with the D. Vision to my PMR/GCA.

Does anyone else wonder or have any idea about the type of person these auto-immune diseases, attack?

I think it could be important to find out in order to prevent it happening - like with Diabetes 2, we know it is partly to do with life-style - diet? lack of exercise etc?

I believe in one of the PMR/GCAUK magazines there was an article re. a lady student at Leeds University carrying out 'research' on the subject - I'm thinking of getting in touch with her and asking if she would be interested in creating a questionnaire to build a 'profile' of such people.

Good Luck to all on your part/full PMR/GCA journey - take good care of yourselves and personally I would recommend upping the exercise (walking, a good one) and forgoing the TV and getting to bed at an early hour!

Sue Savage

Hi Sue, thank you for your lovely post.

Dont worry, I have done my fair share of moaning but after reading how badly affected some people on here have been by GCA losing their sight and also PMR I do feel blessed.

The stats that you quote are very interesting indeed but would be good to know more because the doctors said to me they don't know what causes it.... if I look at the last 2 yrs of my life I would say my body just pulled the plug out but gave me one hell of a way to do it!

I would be interested in some research too. I chatted to a lady on here and she fits the high achiever mold (43 and now blind in one eye). I am a mirror image of your profile and always on the go. I run my own theatre company and have a freelance (self employed) career as well as an opera and theatre director. I never stop! Up till late - 2 am regularly working on several shows at once - 7 days a week when I am in production and often in different countries. The trouble it I love it and this year I reached a career pinnacle to be financially okay and profile in my industry.

I cheated my brain, my body every day this summer saying just get to the 1st Sept and i will take a break - knowing every time I looked at my diary I didnt know how I was going to do it! I live on my own so no -one to stop me and my social life has dwindle to only things around work....

I finished my last show on Aug 12th (in pain, swollen arteries, temple looking like Frankenstein, couldn't touch my scalp / no hair brushing for 3 days and then couldn't chew, but carrying on for the sake of the 24 people I was employing). Doctors on the 13th August and within 20 mins was on 60 mg Pred with classic GCA! Confirmed 8 days later (I paid to see a consultant to avoid a 6 week wait and feeling so frightened to wait all that time)

I have been doing this for many years! 20 yrs ago I had a mini stroke/TIA ..... with loss of walking but a full recovery .... but now I am 57 and need and have and am changing.

Yes, i need to exercise more. I find at the moment anything that is aerobic a bit scary so I walk and yoga and have reversed my life time of cheating my brain and now tell Tina my Temple Artery that she 'has' to relax and we are doing 20 mins of sitting and breathing..... I think Tina thinks she has been transplanted into another body! lol.

If you do get in touch with the researcher I would be interested. Again, as it affects more women than men in general I wonder if it has been neglected a bit....?

but for today, lets count our triumphs. I wish you a happy weekend and a day at a time on our journey; you are doing so well. x

It is probably rather simplistic to look for a "type" - yes, many of us on here were the high achievers, very active types but we are a very skewed population. The vast majority with PMR cover all types - and many are never even diagnosed because it is assumed to be part of aging, "my rheumatics". But most of them take it at that. If you go to local support groups you will find a population really quite different from us - they aren't interested in hows and whys and wherefores but just having a chat and a cup of tea with others who "get" the problems.

All autoimmune disease is much the same - a deranged immune system underlying it, and it attacks all sorts and all ages. PMR and GCA are relatively kind versions - they wait until we are older and do generally go into remission. Lupus and rheumatoid arthritis often manifest in young people - and then tend to just get worse. There is a lot of research ongoing - into autoimmune disease in general to try and find out what upsets the immune system. Once that can be identified there will be a chance of cures being developed. It is happening.

So pleased for you Fieldofdreams. Fabulous post celebrating a huge achievement. I admire anyone who travels alone, not something I would have the confidence to do PMR or no PMR (in my case!). Very Gutsy!

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