Awkward and alone far from home.

Mat48

Hi All. I'm writing from hotel wine bar in city that shall remain nameless. I've changed rooms and gone from monk -like cell with no side table or bedside light to a large version of the same but with a bedside table and double bed (still v hard) but with four pillows. I feel sure that the significance of pillows will be understood by all who read somehow.

Last night went to sleep early as I couldn't read and ankles too swollen and sore to want anything other than oblivion. Woke to man puking in what I assume to be bathroom next to my single bed. Nott nice. All night banging doors - reminded me of a youth hostel - a bad one at that! And as a domestic between drunken lovers played out under my window I became aware that my right hand fingers were stiff and painful once more - locked almost. I lay there panicking thinking is this the emergency that warrants steroids or not? Will man ever stop puking?- who is he - how did this hotel ever get it's 4 stars no wonder we got 70% discount?! Etc etc.


Finally morning came and I found ankles back to normal, wrists and fingers too and was so relieved I just politely asked if I could change rooms and woman agreed yes equally politely. Then a Lithuanian lass helped me lug artwork downstairs to a waiting lass if about 25 years old max - the chairperson of gallery I was to install exhibition with. Walked about 20 mins (nothing said she!) with said lass pulling airbase while I clutched milk and prayed to whoever might have a say that my joints would hold out. Somehow it became evident that I was very much in control of my own destiny re this exhibition ?!

To be fair she helped - but it was my knees that knelt on a high table sticking stuff on walls, my hands that cut and hammered and pulled St fiddly bit of Velcro while she scarpered next door and caught up with her paperwork. By 5pm I felt dog tired mentally, starving having eating nothing since my gluten and dairy free breakfast and knees, back, feet and wrists all saying "no more PLEASE?!". So I wandered through to the office where she was yawning after a long day. I said "just in case I can't make it in tomorrow here's the info for final few pieces that need hung " and she looked completely baffled and said "oh? Why would that be?". So again I explained that this thing I've got seems to thrive off exhaustion and I am truly exhausted. She looked really irritated - as if to say "hey I'm the one who is chairing a collective, waitressing, graduate in residence at my former uni/ art college. All you have to do us travel here, stay in a hotel, install a show (with some assistance from me) - what is your problem? I mean it's only a bit of arthritis after all?"

Maybe she's right - but she's half my age and obviously never been afflicted by anything other than normal young life. I thought of the ones on this forum her age - struggling with the pain and mobility problems I'm having and wondered how very hard it must be for them - surrounded by peers such as this perfectly personable but fuvdamentally uncomprehending lass?

Maybe my GP is right and adrenalin and necessity will get me through the week? But right now knees,feet and brain say "get pain meds down quick and head rapidly for that bed with four pillows quicky while legs can still just carry you!!" - got something off my chest at least! Mat x

valval

i am so impressed at all you managed to get done you should be proud of your self rest now but do not forget to eat val

theresa4

HI
Firstly congratualtions for your amazing achievement today.

Now... I read youre post and felt so upset I could feel your pain and distress you truly are gifted at writing and expression. The young(fit) do find it hard as they have nothing to compare with lets face it there are plenty of adults of all ages who dont understand. It truly is a elite group who can truly empathise with you for what you are feeling and the amazing achievement you managed today and understand the dread of tomorrow morning following the overuse of tender joints.
I hope you get alot of rest with little or no disturbances and that youre joints are more forgiving than you think in the morning.

Love Theresa

Ankyspond

Oh Mat I am so sorry you bare feeling so down and in so much pain, I know how you feel and the frustration is so ovwrwhelming but you WILL get through this and do a great job! As for the young girl put it down to her ignorance of the disease and inexperience of life!

Hope you get on ok and a good nights sleep makes you feel better. Xxx

liesa

oh nasty... im feeling your pains.... my poor daughter is undergoing tests now for arthur, shes got 2 youngsters a daughter of 3 years and a baby son of 6 months, shes in agony with her knees and arms a lot of the time... i feel sorry for her, i was like this at 25 years of age (shes nearly 23,) she lives on the 3rd floor of a block of flats 38 steps... guess there are many girls out there her age who are partying everynight or the weekends at the very least....

we feel for you Mat x

Star2001

Thinking of you Mat and wishing you a better night. See what tomorrow brings but you have acheived so much in getting there against all the odds!

Star x

Ankyspond

So sorry to hear about your daughter. Xx

liesa wrote:

oh nasty... im feeling your pains.... my poor daughter is undergoing tests now for arthur, shes got 2 youngsters a daughter of 3 years and a baby son of 6 months, shes in agony with her knees and arms a lot of the time... i feel sorry for her, i was like this at 25 years of age (shes nearly 23,) she lives on the 3rd floor of a block of flats 38 steps... guess there are many girls out there her age who are partying everynight or the weekends at the very least....

we feel for you Mat x

traluvie

Thinking of you mat,

You have done a great job already and you should be proud of what you achieved..but you still need to rest and take it easy..So that bed with four lovely pillows sounds like a good idea..x

Mat48

Hey thanks to you all for being there for me - it's a great plus when feeling so alone. Hubby is great on phone and sons too - but you lot know how big a cliff I've climbed from a personal perspective and that's special. Still got some more work to get up on walls, catalogue and perhaps even some time off tomorrow pm if I'm done in time.

Another young lass from the kid's hospital where I worked briefly as an artist, is going to take me out for a bite to eat tomorrow night if I'm up to it. Unlike the artist she is just naturally sympathetic and full of empathy - also living here far from original home so I would like to see her tomorrow if I possibly can. So I'm really not branding all young with this uncaring label because as you rightly point out there are those of all ages who are naturally thoughtful and those who just aren't. Dreading the preview on Friday evening. Will just have to take it easy all day and hope for the best - if only my arther didn't pick on me most in evening and at night!? Mind it worked in my favour today so I'll quit being down now and just enjoy being in bedroom with tv and four pillows - could do with a hot water bottle it's a bit freezing in this place but i can't have it all! Thanks again for keeping me company and stopping me feeling so alone. Mat xxx

traluvie

Sounds like you have the evening set up nicely..
That lunch tomorrow sounds nice too, will lift your spirits, some good company and a catch up. might just be what the doctor ordered..
I hope you have a good nights sleep and feel bit more recooperated tomorrow..and enjoy your lunch date..
Take care

Mat48

Thanks Tracy I fell asleep half way through Grand Designs and just woke in all my woolies feeling v snug! Right finger won't bend and has swollen up but I'll blame hammering and peeling and using scissors for that. It's not actually lunch it's dinner and therein lies prob - I'm worthless as company in evenings just now - should have "werewolf" imprint on forehead?!

Trusty iPhone is enabling my posts with done struggle but just wanted to add how sorry I feel for the daughter with youngsters and arther looming. Also wanted to say thanks for saying nice things about my writing style .. I'm really a thwarted novelist at heart! You never know I might bore the world with words one day when and if the embroidery needle becomes impossible. Of course none of you get to see whether that creative shift would really a good thing or not so you will just have to imagine the exhibition from my daft rambles! :P Mat x

valval

they not daft rambles we are enjoying going through all this with you i think you are so brave try to have a nap tomorrow then you might feel better for your meal out it would be a shame to let her down even if you do not stay long it will give you a lift to be in the company of some one who understands better. if you see an army stores got some of those hand warmers you break the metal disk inside and they heat up incase you are cold to night val

Mat48

Hey Val thats a great suggestion I'm near a big shopping centre will go there soon and look.

I slept like a log last night only woke up at 8.15! Must have been the support and advice from you all keeping me company last night! Having my breakfast now - so far so good I'll be back later to let you know if body forgave me for a while day (and tonight and tomorrow night too - but that would be too much to ask of it?!!)
Mat xx

frogmorton

Hey Mat

you are never alone with thsi forum around are you really?

What a day yesterday was for you though :shock: I am glad the majoirity of the work was done in the end (if by you). and hope that the exhibition is a great success.

What a grot hole the hotel sounds to be :???: Poor you!

Hope you do get to see the lass you want to catch up with and enjoy a nice meal out tonight.

Love and hugs

Toni xx

barbara12

Well you did it, and that is what matters, you should be very proud and relieved.
Has for its only Arthur, we all get that, so dont you worry about it, we know some of what you are going through, and how hard it must-have been
Now you try and get some rest

dreamdaisy

You thought it was going to be tough and sure enough it is, but you are coping and getting things done: the one thing we arthritics have to learn, and learn rapidly, is to keep going no matter what, and on that front, Mat, I reckon you are doing OK.

As for the hotel, am I right in thinking you are in London? Thats a big old noisy place, heaving with people and life goes on for the whole 24 hours of every day but you will soon be back in the peace and quiet of your lovely part of the world. Take care. DD

elnafinn

All the very best for today, Mat, you are doing really well. You knew it would be tough and you are right, but you have grit and determination and arthur will not win on this one. Hopefully once home you may be able to take it a little easier, I sincerely hope so. We can be very stubborn at times and really push ourselves but it is not good to make that too much of a habit if we are hurting.

Fingers crossed for today for you and another day to cross of the calendar and one day nearer to being home again.

Hugs
Elna x

tjt6768

Just wanted to wish you the best of luck. Try and rest when you can though
Let us know how things go...

Mat48

Thanks Tony. Actually it's been another long day. The velcro tape I had seems not to have stuck to the backs of our embroidered pieces and five of six artworks, one comprising 64 different pieces were all on the gallery floor this morning. Going in on my own tomorrow to see if the many hours spent resetting it all this morning have worked or not. If not the only option will be 64 squirts of superglue I'm afraid - but superglue on back of embroidered silk has to be a last resort!

I walked back to the hotel via a shopping centre where I bought my dinner from m&s to eat in hotel room as no time for lunch. Walked past Jones shoe shop and saw rows of boots. Feet and legs so achy I could hardly walk after a day of standing, climbing ladders etc. So in I hobbled. Spotted boots called Fitflops with ortho looking soles. Tried some black zip up leather boots and it was like being transported from old leather "sensible" shoes to something really amazing. Looked at self in mirror and blimey - a
taller cooler looking me stared back?! Looked at price and nearly fainted. :eek:

But dear readers - the thing that was by this time I was smitten? So I did
the deed saying to self "okay this is for me to help me ignore, fight or even come to terms with this arther!" Told hubby and he was surprisingly
cool about it. 8) So there we go! M&S supper in room and 2 glasses if vino in the wine bar with lovely lass as planned. She's coming tomorrow to check okay bless her. She saw me struggling with the stairs and that was that.. She's leaving work early and coming to check no more embroidery
on floor and on hand if need be to sort it. This was only the third time we've met. Lovely, lovely girl. So I'm being spoilt by someone and spoiling
self with my new Fit Lop boots. So far so good - only a day and preview left to endure and hopefully the joints will be forbearing until I get home?

Makes me wonder if the worst episodes/ flares are psychosomatic with me because if doing what ive done today and yesterday hasn't caused a total flare then what will? Baffled and wondering?
Off to sleep now Mat x

ps sorry about mad looking errors but am doing all on wilful little old
iphone! Pps the lovely lass isn't same as gallery lass who I feel for as she's taken on too many jobs and can't think straight about anything including me. Fair enough - we were all 23 once - done reading this might still be!?

valval

boots sound great well done on you for going mad and getting them. the young lass sounds lovely such a careing person you are so lucky and she must think a lot of you or she would not have put her self out this way val

traluvie

Morning Mat..

How are you this morning?..
Boots sound like heaven..wanna share

Mat48

Hey yes thanks a brief share. All going well - I nipped into gallery on my own this morning and found more bits had tumbled but then discovered that they were the pieces I must have missed with my double check so sorted 'em and all looks pretty good though I do say so myself!

Prob tempting fate but all well with the joints - not their old selves - still struggle with keys in doors and anything requiring strength or twisting but all joints seem to be bearing up okay. Is this the thyroxine levels settling or the adrenalin pumping or just good fortune at last I wonder? Am taking all the usual pain meds so will keep everything going until this show is underway and then try dropping them slowly one by one bit by bit as I don't like depending on all these anti-inflams, cocos and Amitriptyline every day and night if I dint have to?!

Thanks for putting up with my sagas- going to have a kip now before the big night ahead. Hugs to you all- Mat

tjt6768

All the best for the big night, hope that it goes well.. Sorry if you have already said, is it your artwork or are you managing it?

Good luck either way and take things steady.

PS, there doesn't always have to be a catalist for flares, least not in my experience :roll:

Mat48

Thanks Tony - yes my artwork for a solo show in a artist collective gallery in a far away city (unspecified because I've been rude about it!) just had an afternoon snooze. Take your point about catalyst re flares. Guess I'm always seeing coincidences as more than they might be. Not sure i really know what a flare is actually so maybe I haven't had one?

By this I mean I thought I was having one last week and then found out I had been taking wrong dose of thyroxine for a month! Thought it had all gone away when I had first period in years a few months ago and all just menopausal blip but it all came rudely back? Again not sure if it returned as a flare - just returned to my knees and then rotated from joint to joint and has continued to do so ever since. I assume a flare is when lots of joints are affected at same time, and you feel wracked with swelling and pain and generally flu-like and rubbish? I did feel this way last week but put down to wrong dose thyroxine and more recent pain in wrists ankles,
knees etc down to stress and repetitive strain etc. Maybe I'm just determined to find a reason everytime the pain escalates but I have always seemed to find a reason for particular joints getting painful and stiff - not just doing so by themselves?! I could well be wrong and maybe I've just got used to things hurting almost 24/7 and never getting so bad I can't move but (except for 3 week blissful interval back in August) never going away either?

Gotta get my glad rags on now as out for an early tea with friends - hope there's some hot water to be found in that hotel shower for once hey ho.
Mat x :???:

tjt6768

Being neither genetically or medically qualified to comment on such wimminy things I shall forgoe any answering on the subject, lol..

I have had flares such as the one that is still hanging around that have all the joints jumping up and down in raptous firey harmony singing 'burn the host, burn the host'....
My first official flare was early last year as I had never even heard the term before that. Was just the left knee. I have had all and inbetween since then, lol.. IBS sometimes joins in at the same time.
AS it is now :roll: :oops:

I think flares could be as individual as the disease itself though.

Best of luck, have a great exhibition..
Our Daughter studied art for a year then gave it up, she is so talented though.. She still draws though and has done a few oil paintings, mainly portraits and some tattoo designs.

Mat48

Hi Tony - nah I did wonder if should even mention the period on a mixed forum but it's no dif to mentioning IBS or prostate really especially if it's relevant to Arther as I believe my menopause might be. Hormonal fluctuations affect men too - OH has prostate troubles that have all sorts of remedies relating to testosterone. In Chinese medicine its all about temperature of blood which I think makes lots of sense but I lack the time or inclination to research alternative remedies although that's not to dismiss them - just I'm too lazy!

The preview was good - back in hotel now exhausted. I didn't feel splints (dirty looking overworn) would be appropriate and have hardly worn them during the daytimes lately because working with Velcro and bits kept sticking to them! Now wrists and fingers all throbbing and I couldn't pour people wine from the box as couldn't press the tap thingy which was embarassing?! Also have to be careful who I mention the arther too as we are in line for some big public place commissions apparently so don't want them crossing me and OH off their lists as too problematic/ slow. So it's a case of continuing to suffer for my art I guess?! Splints back on early flight home tomorrow - back to real world of OH, teens and dog. I have a nasty feeling that's when the flare might flare as we go on holiday in Highlands on Sunday. But hope my hunch is misplaced as the last one has proved to be!? Sleep well! Mat x