My London Marathon!

Mat48

Hi Everyone. I thought I'd better update you all having gone on about this trip and all my worries. It all went very eventfully. I didn't flare as I'd worried I might having come off the Prednisolone - although I did have some more on me just in case.

I managed to go from house to house, bed to bed - and even made a site visit for an artwork with only my hands and wrists playing up something rotten. Considering that every tube station seemed to have an infinite amount of steps and I had a small but fairly hefty suitcase on me I think this is rather amazing. Of course I'm starting to pay for it in feet and ankles now but knees and shoulders have yet to kick in.

My sister and I almost missed the funeral when our tube train in outer area of North London was held up by works on line ahead and we were asked to make alternative travel arrangements by LT. So we ended up in quite a rough area of town dressed up in our funeral attire - walking round looking for a minicab place. We paid £25 for a trip in a dodgy looking car - which got held up in a police roadblock for ten minutes - and finally arrived at Waterloo to deposit my suitcase in left luggage for the day. Then my sister persuaded me that it would be better to get a black cab to take us to the very obscure sounding church in the City than go there one stop and a gentle stroll by tube - while our other sister was saving us seats. My sisters are both deaf so an interpreter had also been arranged to attend and they needed to be able to see her clearly.

But the black cab took us to the wrong church a fair distance and a lot of heavy traffic away - by which time we only had ten minutes before the funeral service started. So we got directions off someone and were told if we ran we might just make it. So in a real stew we ran through ancient, Dickension streets around St Pauls and finally located the church. Luckily for us the hearse had also arrived late due to traffic and narrow street issues. The funeral was very beautiful and the music was wonderful but I was crimson faced throughout and sweating profusely after my London marathon! :oops:

As I'm sure you can imagine now that I'm back at home everything is heading full pelt towards a flare... might even be in full pelt for Thursday when I see the rheumatologist for 2nd consultation. I know it sounds sad but I'm hoping so for sake of a diagnosis and end to almost a year of uncertainty.

Took lots of photos of hands alongside the ones of all the sites and family etc. Now my veins are all raised, knuckles hellish and red hot almost all the time and three fingers stiff and swollen as rods with bruised, puffy looking middle joints - not a pretty sight at all like I've been in a bare knuckle fight! And the rest of me is all stiffening up beautifully too so rheumy might just get what he asked for "I need to see you in flare mode to make a diagnosis next time" he said and five months later he just might be so lucky?! :roll:

Hope you're all well? I will try to read some of the many threads I've missed while away once I've finished my unpacking. Mat x

kellerman

Oh Well done,
What....a black cab driver that gets lost.My mum would never go on the underground so when we used to visit my brother on the south coast we always got a cab from Kings Cross to Victoria.
I would probably have to do the same myself now.
At least you were sort of ok down there and now your back no doubt you'll suffer
Please don't take this the wrong way but I too hope your flaring when you see the rhumy.I also hope you get some answers,but don't hold your breath.
From what I have read on the forum they don't like to commit themselves.
My 2nd appointment isn't until February.I live in hope!!!
I'm so pleased for you that things weren't as bad as you thought they might be.Now relax...you've done what you wanted to do for your friend..have some me time.
Please let us know how you get on...will be thinking of you.
May

Mat48

Thanks May. I've done nothing but snooze this afternoon although I managed to walk dog with hubby - who had to hold the lead.

Yes I'm really quite desperate for this 2nd rheumy apt to be affirmative. I'm hopeful only in that I've got photos and if it's anything like today I think he might have to because I really won't put up with being stuck on steroids and painkillers only for another 6 months and my GP is just as keen to see treatment get underway. My right forefinger alone is now permanently inflamed and purple/ hot at the joint and won't bend and knuckles below all swollen constantly as well and this stops me from doing my work as a freelance artist so I will tell him i need answers and the correct medication NOW PLEASE!?

How are things for you and how's your sister? Big day coming up for you if I remember rightly? Mat x

barbara12

Oh Mat
I am tried out just reading this, you really have done so well and you must be proud that you did it..I was wondering how you where getting on...to be honest I thought you might not have gone....good on you for not giving in to arthur
Now I do hope that the flare dosent ascend on you...and fizzles out on its way
You take care x

frogmorton

Welcome Home Mat

What an adventure you've had! some of it sounds almost like a farce - all the hassle getting to the funeral....you couldn't have made that up :shock:

So gald that you made it and did all that visiting lass and survived so well.

I do hope you cope ok until your imminent rheumatology visit and that the evidence you have (photos) and any physical evidence is enough for you to get your long awaited diagnosis.

NOW rest up lass

love and hugs

Toni xx

Mat48

Thank-you for saying so Barbara - and Toni now! To be honest I feel far more in awe of many people with much worse arther than I've yet experienced. I've been incredibly lucky to only have had it recently in upper body - which is limiting and still painful and stops me working as an artist just now. But at least I have my mobility still re my bottom half.

I read of so many who are stuck in wheel chairs or having to use crutches and I'm extremely thankful that my legs are still grand. I've had bad knees, ankles and feet several times earlier on in the year - fortunately when hands weren't so bad - and I promise that if it all flares up together I won't be half as ambitious or brave sounding!

But this week really was a marathon and I do feel so glad that I made it through and am now home again with my husband and sons. I did try and use my horribly swollen fingers and knuckles as a way of educating my sisters, their friends and my own close friends about the horrors of arther because i really don't think anyone understands who hasn't lived with it personally? Just asking a friend or sister to zip up my boots or unpeel a pot or do anything involving strength or too fiddly made their eyebrows rise in horror and concern for me because I'm usually very independent and they haven't seen me since it all kicked off. I really think this is important not so much for me, as for those who are suffering much more extremely - to wake up a few more people each time to how things are with arther? Mat

frogmorton

Hi Mat

well-done for educating your sisters about how your arthritis affects you. It will have been a shock to them with you being independent as you are.

I think you are good for counting your blessings as you are (not having mobility issues etc), but arthritis is pretty evil to do it to an artists hands :x grrr!!!! Sooner you get some treatment the better so they are less swollen and painful.

Thanks for asking l am doing pretty well toady oddly my hands are joining yours!!!

Love and hugs and nice to have you back

Toni xx

Mat48

Hi Toni,

Now can you remind me what form of arther you suffer from - is it RA?

If so perhaps you can tell me if your swollen fingers or knuckles go a kind of dark bruised colour and if your veins all stand up weirdly on your hands? Maybe it's just because I'm fair skinned?

Shame really because I used to be embarassed by my hands because they were covered in eczema but now that's all gone and they were really rather nice until the arther kicked in and now they look like a real bruiser's hands?!

Ah well as I keep saying knees, ankles, toes and shoulders are not playing up much so hooray for big mercies! Mat x

valval

sorry i have only just got to this hands a bit painfull. well done you did it even though it worried you so much you did it be proud do hope you are in flare mode for rhummy i never am will have to take pics and show him val

Mat48

Hey Val isn't it so annoying that we are bound to be feeling much better when we see these people? - is it our brains playing tricks or something?! I feel too supersticious to take any of my usual pain medicines during day time this week so am only taking at night when pain in hands and wrists is just too epic not to. We all need to cross fingers we are flaring on the day itself of course - someone advised me to fake it since i know all too well what it's like but i'd never be able to pull that off and he's very thorough so would be worse to be thought a fraud than just having a one off good day. I'm expecting the worse/ best though and armed with loads of boring pictures of pregnant pinkies with bruisy looking joints!

Take care and blow all your flares up my way first thing on Thursday morning please!
Mat x

kellerman

Oh Mat,
So good to have you back posting and I'm pleased you don't have arthur in your lower half.
Now to your hands...well I have a swollen right hand...blue...looks like I've just hit the wall with it.Been like this for a while...rheumy gave me a steroid jab..didn't work.I also have it in both knees,right hip,back and ankles.
I know its not funny but your time in London sounds like the wacky races.
So glad you are resting hun,take care May

Mat48

Blimey that sounds lots worse than mine May?! I was just hoping that someone was going to say "yes i had that in my hands once upon a time but it's all gone away now with the right medication" because my hands look and feel so ugly - yiuck!

And yes it was funny in a dreadful kind of way - me trying to work out where the church bells were ringing and all these long winding old streets to choose from - sis in high shoes (me in brilliant FitFlop boots!) and 1 minute left before the service was supposed to start. Then when we arrived same time as hearse my sister bombed down the aisle looking for other sister waving her hands about with the entire packed congregation watching on in horror! Other sister up in top firmly hid as did the interpreter - and me I hung back with my purple hot dripping face (from running at that stage anyway) - it was awful but very funny in retrospect!

Take care and goodnight. Mat xx

kellerman

Mat....These steroid jabs do work....I was just unlucky.
Just really annoying especially as I'm right handed but heyho had worse than this.
Mine is probably OA.I have osteoporosis...fractured vertabrae....took me pestering my GP four months before she'd send me for an xray,then MRI.
I have a really useless doc.She told me I had a kidney infection 8 years ago and I had stage 3 ovarian cancer.I got it back again just over 2 years ago but luckily I have a great oncologist who picked it up straight away.
All the poison of 2cycles of chemo has probably caused the problems I'm having now.
I do have my moan days....don't we all...but just coming here and seeing what others are going through....a lot of them younger than me...makes me think I'm lucky.
I'm here..and I intend to live for today....I'll face tomorrow when it comes.
Oh and I am looking to move to a different GP.Doing a bit of homework.
You take care of yourself....carry on resting. May

Mat48

Poor you May - I had picked up that you'd had cancer earlier - for what it's worth I think you're very brave. I do agree about those much younger than us who have had their teens, twenties or child-bearing years mucked up so dreadfully by conditions like RA being worse off. I thank my lucky stars that my boys are all well into and almost out of their teens now - I'm 48.

Also all this pain and worry at least forced me into a big taking of stock and I've spent the past nine months hell bent on getting as healthy as possible by huge shifts in diet and exercise. I put the fact that my hands and wrists are currently the worst afflicted parts of me down to the fact that I have worked so hard to try and make my legs and hips stronger and to lose a lot of weight. None of it comes easily though - this thing started in my knees and feet/ ankles so I really do mean it when I say that I'm lucky it's just in my top half now. I appreciate every day that I can walk the dog (lead hurts a lot so I have to try and take him places where he doesn't have to be on it!)

Driving is going to be a bit tricky with wrists and fingers bad but I have lovely friends and hubby and I plan to ignore the pain in hands as best I can and keep working as an artist today and everyday because that keeps me sane. Not letting arther rob me of my sanity!

How is your sister by the way? Mat