juist a rant!

bailey27

I have recently had to cut back on my sport and can longer compete due to the intensity of training I'd need to maintain in order to compete at the higher level. I recently had to pull out of a competition because I was having a huge flare up. I explained to my coach and some of my friends with who I train with that I had arthritis and was having a flare up and couldn't train for a while so I could get my meds uder control. They looked at me as if I was mad and even said oh I got arthritis too sometimes, I got to a point where I just couldn't be bothered to explain any further as I was wasting my breath as they just were not listening to what I was saying. One of the guys even said that he had bad knees too and he carries on with his training. One of them said to me, you were fine last week what have you done? Trying to explain what a flare up was and that you don't have to physically do anything to yourself to be in pain, it just wasn't sinking in and now they are being off with me because of it. I have told them I can't compete for now and the immediate future because I need to get my meds under control and be carfeul of the impact I am putting on my body as the new medication makes me feel run down.
I feel like the arthritis has comletely disrupted my life and don't know what I should be doing. I was suppose to start a paramedic course this septemebr gone too which I had to pull out of because of the morning pain and stuffness I get. I am still doing the odd personal training work but have had to cut right back on that too because I am physically unable too sometimes. So basically, my work and sport has been put on the back burner for now and I feel like everything is out of my control.

woodbon

HI, I'm so sorry that as well as having to put up with the flare, your team mates are not able to understand. Its ignorance I suppose. Its time we made more of what 'real' Arthritis really is as I suspect a lot of people think its just the odd ache or pain people suffer from as they get older.

How about leaving some of the leaflets that are available, from here about the place or even handing them round, so that they can have a bit more idea of what your going through. Or maybe a poster on a notice board? It seems as if arthritis is a bit of a Cinderella when it comes to TV programmes that inform people of medical diseases.

I I hope you feel better soon. Love Sue

ritwren

Sorry to hear it's been so difficult for you. It's hard enough to try to cope with this disease and flare ups when they come without having to try to convince people what it's like.
When you are feeling stronger you might be able to explain things to people but you might also find that their opinion does'nt matter as much as it does now when you're feeling low. I agree with what Sue says and might even consider leaving leaflets around myself. So many folk think Arthritis is nothing more than a few aches and pains that everyone has to put up with. :roll:

For now just try and concentrate on getting over this latest set back and take as much time/rest/pain relief as you need.
bye for now, hope you soon feel stronger
rita

elnafinn

Dear Bailey

My heart goes out to you big, big time. I only have to think how my 30 years old daughter would feel if suddenly she could not do all the hardcore swimming that she does. It is a big part of her life and she loves it. She would be inconsolable, feel absolutely the pits, totally desolate.

It is a double whammy for you because it is your work as well.

It is awful enough anyway but it makes it all that much harder and more difficult to bear and cope with when those you train with, your coach and friends, appear to have no understanding and no wish even to listen and take on board what you are saying without replying with flippant comments.

You rant away on here as much as you wish, Bailey.

Perhaps you could write to your coach to educate him a little regarding arthritis in general and especially your situation in all this and enclose some leaflets. A coach should be made aware, of all people. Surely he and your friends must all realise that given the choice you would not be backing down for the time being. They must know how keen you are and how terrible it has been for you to arrive at this decision through no fault of your own.

Life really is a bitch at times, isn't it?

Luv
Elna x

bailey27

Hi thanks so much to you all.

I will get some leaflets and leave them about for people to have a gander over.

It is surprising the amount of relief you get typing away what you are thinking. I may need a new keyboard soon as when I'm frustrated I really hit these keys hard!! lol

Your kind words and advice have really helped, thank you so much. xx

mellman01

Hi bailey.

I have been down the same road as you, trying to explain what bad OA is mostly pointless, a lot of people these days are very self centred and ignorant until it’s something that effects them, OA has effectively robbed me of so much if I stop to think about what it’s done I get really angry and down about things, so I sympathise 100% with you your not alone there are lots of people on here that have been down the same road so if you feel the need to shout and rant then please do, there are many on here know exactly how you feel.

sharmaine

Hi
Your team-mates aren't being very nice. Only another person with arthur can understant what the pain is like - and a flare up is just dreadful. I was told by my GP that my OA would only get worse but some joints could be fixed by an operation. She also explained that my mobility would deteriorate - she has been right on all counts!!! Strenuous exercise is out of the question for me. Where do you have arthur? I'm lucky if I can manage a half an hour walk on the crutches!!!

Take care of yourself and if the training is painful because of arthur then don't do it. Some years ago I used to enjoy regular bike rides with friends but it was causing me so much pain that I could no longer accompany them. I didn't realise it was becaue of arthur at the time I was told it was sciatica but I had to give it up because I was in agony. I got a lot of stick too. However, when then see me now (should I be out shopping) they look ashamed - I can see it in their eyes. True friends are those that hear what you say the others aren't worth having around.

Do what's best for you never mind what others have to say.

Sharmaine

skezier

Hi Bailey,

Sorry I am so late here. I know exactly what you mean there. I had the same and it took a lot from me but I have found other things that are within my ability and it really has helped. Sometimes they are also under threat but I hope you will be able to find some kind of compromise with your body that is something you can still enjoy. Luv and a real heartfelt ((( ))) Cris x

carol101

Hi

Sorry to hear you're having a bad time of it at the moment. I am just coming out the other side of a bad time so i know exactly how you feel. It somehow feels like this 'thing' has taken over your life and you have no control over it.

Your team mates aren't exactly helping though either. Like someone else has said, it's ignorance. I also was ignorant to it untill i was diagnosed. I never realised it wasn't just the odd pain but it can take over your whole life.

Maybe as well as handing out leaflets you can direct them to this web site and read some of the postings on what living with arthur is really like.

A few weeks ago i felt my life had ended. I was constently off work with the pain or depression, had no energy so never done any housework so hubby had to do it all. I didn't even have the interest or energy to do my hobby of crochet! But now things are getting a lot better. There will always be things a am unable to do but i'm feeling more like 'me' and i am controlling what i do, not arthur, not the meds, me.

We all have the bad and low times but also we all come out the other side stronger people.

Carol X

bailey27

sharmaine wrote:

Hi
Your team-mates aren't being very nice. Only another person with arthur can understant what the pain is like - and a flare up is just dreadful. I was told by my GP that my OA would only get worse but some joints could be fixed by an operation. She also explained that my mobility would deteriorate - she has been right on all counts!!! Strenuous exercise is out of the question for me. Where do you have arthur? I'm lucky if I can manage a half an hour walk on the crutches!!!

Take care of yourself and if the training is painful because of arthur then don't do it. Some years ago I used to enjoy regular bike rides with friends but it was causing me so much pain that I could no longer accompany them. I didn't realise it was becaue of arthur at the time I was told it was sciatica but I had to give it up because I was in agony. I got a lot of stick too. However, when then see me now (should I be out shopping) they look ashamed - I can see it in their eyes. True friends are those that hear what you say the others aren't worth having around.

Do what's best for you never mind what others have to say.

Sharmaine

Hi,
I have it in my hip and lower back. I am also getting a lot of pain in my shoulder (all on the left side).
When I get a flare up I literally can barely walk let alone exercise. I am trying to think of what I can do instead to occupy that time but am struggling to come up with ideas. I have always played sport since the age of about 8 and havent had any time off so is a big part of my life. I have played various sports competitively and spend a lot of time training for them etc, now I feel like I have this big void in my life.
I have tried swimming but struggle with the front crawl because I find when I lift head out of the water my back cramps up and when doing breast stroke my hips hurt . . . . so I have come up with attempting to cycle but the last time I tried that my back was in agony for days.
My life has gone from one extreme to another at the moment.
Jsut a short while ago event hough I was dealing with this arthritis I was able to play my sports without anyone even noticing I had this problem, now I can barely get out of bed some mornings.

I have been on sulphasalazine for 5 weeks now, should I be feeling some benefit by now?????

tkachev

Hi Bailey
You might need more than just Sulfasalazine. They only worked for a few months for me although I still take them.You will probably need a combination of medication to sort you out with such a bad flare.
One of my pet hates is when people say they have arthritis. Every little strain or bruise is arthritis to most people. But this arthritis damages your healthy joints and causes extreme pain all over and can cause joints to need replaceing eventually.Arthritis is a word banded around too much to mean a few aches and pains and is to be expected as you get older or compete in sports.
I did give up my gymnastics because of all this R.A and I have had tennis elbows since 1991 so couldnt put weight on my arms or swing from the bars. The worse thing is not being able to help my 6 year old with her gymnastics, or play football with the boys. If I could do these things it might encourage them to take part more.
I really miss dancing and have to watch nowadays.
I am sorry your friends dont understand and dont see your discomfort. Some people dont want to understand. But maybe as time goes by they may start to realise.
Take care Bailey
Elizabeth

sharmaine

Hi Bailey

I was just reading your post again and thought I would add that you should see your GP again with regards to your medication. It takes a while to get the balance of meds right. I started off with diclofenac 3 times a day but as my mobility got worse and the pain increased etc I now take 3 diclofenac a day; 8 co-dydramol daily and 2-3 amytriptilnes at night.

I bought a mini-pedal machine which you can use in a seated position or lying down. I cannot use it in a seated position because my knees are just too bad, however, I found that I can use it if I lie down. Mind you it takes some jiggling to get the right distance where I'm not in agony!! I just feel better if I can manage 15-20 minutes every other day. I'll do it as long as I can. It cost about £32 from Argos. We also have an exercise bike which I loved to use to keep my fitness up, however, I can't even make one rotation of that without screaming in pain even at the lowest resolution. My husband uses it regularly - because of work he hasn't the time to visit the gym and his spare time he needs to help me a lot more than he used too. He's lucky to have 2 good legs.

You sound like you were quite an athlete so it must be particularly hard for you. Maybe you could ask your GP to refer you to a physiotherapist. I'm thinking of asking at my next visit especially as both legs are dodgy and my shoulder is now affected!!!

Sharmaine

bailey27 wrote:

I have recently had to cut back on my sport and can longer compete due to the intensity of training I'd need to maintain in order to compete at the higher level. I recently had to pull out of a competition because I was having a huge flare up. I explained to my coach and some of my friends with who I train with that I had arthritis and was having a flare up and couldn't train for a while so I could get my meds uder control. They looked at me as if I was mad and even said oh I got arthritis too sometimes, I got to a point where I just couldn't be bothered to explain any further as I was wasting my breath as they just were not listening to what I was saying. One of the guys even said that he had bad knees too and he carries on with his training. One of them said to me, you were fine last week what have you done? Trying to explain what a flare up was and that you don't have to physically do anything to yourself to be in pain, it just wasn't sinking in and now they are being off with me because of it. I have told them I can't compete for now and the immediate future because I need to get my meds under control and be carfeul of the impact I am putting on my body as the new medication makes me feel run down.
I feel like the arthritis has comletely disrupted my life and don't know what I should be doing. I was suppose to start a paramedic course this septemebr gone too which I had to pull out of because of the morning pain and stuffness I get. I am still doing the odd personal training work but have had to cut right back on that too because I am physically unable too sometimes. So basically, my work and sport has been put on the back burner for now and I feel like everything is out of my control.

skezier

Hi Bailey,

Just to say my sulfa took almost 4 months to stop the last flare and it was really good for a few weeks, now through a combination of over doing it and stupidity I seem to be having another flare. You may find it helps you soon, mine didn't so my rumo upped it considerably (almost doubled the dose) so maybe you could ring and ask if they have any suggestions? Thankfully my rumo's secretary was really helpful.

Like Elizabeth said it might be we both need an add in to help the sulfa out? Hang in there Bailey and I really hope you soon have an improvment. ((( ))) Cris x

tillytot41

Bailey i so understand how you feel out of control,this disease seems to affect so many parts of your life.
Ive had my own florist shop until May of this year but was struggling badly so had to give in.I think i was a good florist too and i enjoyed it,infact im very creative and have been unable to paint and now struggling to use pc .Even holding a book to read!!!!
I havent really so far found people to be not understanding,infact alot of people i talk to know someone who has arthur and know how much it affects them so im sorry your team mates just dont get it,putting leaflets around sounds a good idea.Some times you just have to let it go over your head not always easy i know but believe me im having to do it it other areas in my life and its very empowering(whoosh there it goes over my head again lol)
Anyway just wanted to give you some support
Ali xxx

fulwoodowl

Hi Bailey

Cheers for pointing out your message and yes I can definitely see the similarities. I used to play a lot of sport, mainly football up until about 5 years ago.

Since then I've tried to play other sports such as tennis, but even that has proved to be beyond me on many occasions.

The biggest problem though for me is my work, more than my personal life, as I really struggle with people who just see a (fairly) young man saying that he can't do his desk based job because he can't sit down all day every day. They view me as a malingerer and lazy rather than suffering with high levels of pain.

My HR refuse to move me to an area of work that would assist me, so I carry on every day, doing a bad job, badly. I think they just want to push me out of the door personally, but still.

Anyway, whatever you all feel out there, don't let it grind you down. I've tried my darndest to beat it more than it beats me. There are many days which I fight and lose, but there will be days when you gain the upper hand, and somehow you just have to think of those (easier said than done though)

tkachev

fulwoodowl wrote:

Hi Bailey

Cheers for pointing out your message and yes I can definitely see the similarities. I used to play a lot of sport, mainly football up until about 5 years ago.

Since then I've tried to play other sports such as tennis, but even that has proved to be beyond me on many occasions.

The biggest problem though for me is my work, more than my personal life, as I really struggle with people who just see a (fairly) young man saying that he can't do his desk based job because he can't sit down all day every day. They view me as a malingerer and lazy rather than suffering with high levels of pain.

Hi,
Go on the working matters forum on advice about difficulties at work.Quite a few members have similar difficulties with work,
all the best
Elizabeth

My HR refuse to move me to an area of work that would assist me, so I carry on every day, doing a bad job, badly. I think they just want to push me out of the door personally, but still.

Anyway, whatever you all feel out there, don't let it grind you down. I've tried my darndest to beat it more than it beats me. There are many days which I fight and lose, but there will be days when you gain the upper hand, and somehow you just have to think of those (easier said than done though)

tkachev

Hi sorry
I cannot seem to delete the above post. My message is somewhere in the middle. Hope you find it.
BEst wishes
Elizabeth

bailey27

Hi
Yes thanks everyone, it is rather frustrating but am slowly learning that not everyone you think are your friends, not everyone you'd expect are as understadning and on the plus side I have discovered who my true friends are.

There is ony one person in this world who is there for you 100% and that is yourself, you get friends and family who support you but even then I find they don't quite understand however hard they try.

I went out for lunch today with my partner and family and even then couldnt enjoy the meal totally as my hips hurt too much on the seats, then there was a breeze around my back which didnt help. All these things you dont like to mention because it would sound like you are moaning and I wouldnt want them to feel uncomfortable. Sometimes it is easier just to stay at home and wrap yourself up in a warm blanket, but then I am 29 years old and refusing to let this rule my life!!!

(ooops, just ranted again - sure feels good!)

fulwoodowl

I'm definitely with you Bailey on the not wanting to moan all the time front. Sometimes I'm sick of hearing myself groan, even if it's only just in my own head.

Sometimes, I read the posts on here and remind myself that I'm really quite lucky that I get the pain to the lesser level that I do. While it stops me from doing all of the things I used to do up to 5 years ago, I'm at least still on my feet (mostly!) and can occasionally still play sport, even if not to the level that I would truly like to.

I'll take a look at the work section too, thanks for the pointer.

ritwren

Bailey rant as much as you want, that's one of the reasons we're here. You know it sounds to me like you need something other than the Sulp at the moment. Do you take any painkillers and or anti-inflammatories? If so I wonder if you may need to increase the dose.
It's true you find out who your real friends are when you're unwell with arthur. I think we've all had experiences that have surprised us. I'm concerned that you're not being supported very much at work. Have you spoken to the helpline and / or posted on the working matters forum. You know I'm sure that your condition is covered by the DDA and your work have an obligation to make things as easy for you as they can. It does'nt sound like they are doing that.
Hopefully you'll have more days where you're stronger than arthur but just now be good to yourself and rant as much as you want.
big hugs
rita

bailey27

ritwren wrote:

Bailey rant as much as you want, that's one of the reasons we're here. You know it sounds to me like you need something other than the Sulp at the moment. Do you take any painkillers and or anti-inflammatories? If so I wonder if you may need to increase the dose.
It's true you find out who your real friends are when you're unwell with arthur. I think we've all had experiences that have surprised us. I'm concerned that you're not being supported very much at work. Have you spoken to the helpline and / or posted on the working matters forum. You know I'm sure that your condition is covered by the DDA and your work have an obligation to make things as easy for you as they can. It does'nt sound like they are doing that.
Hopefully you'll have more days where you're stronger than arthur but just now be good to yourself and rant as much as you want.
big hugs
rita

Thanks, unfortunately I am self employed so don't get any sort of help with owrk. I work as a personal trainer so this really is limiting what I can do. I have already cancelled all work until afetr 11am as I am as stiff as a board and it takes a good few hours when I wake up to get the joints moving. The problem I am having at the moment is that in the mornings I am full of beans yet can't move but by the evening when I could potentially get more work my joints are ok but I am totally exhausted.
The main hours I can work are basially around working hours so 6-10am and then 5-10ish.
I think I will go back to my GP and ask about my meds, I am currently taking celebrex twice a day, predniasalone 20mg a day in the morning, omeprazole and just this week have started on ferrous sulphate for the low iron.
Since I started taking celebrex I haven't noticed an ounce of difference so will suggest they give me somethig instead of that.

ritwren

Bailey, Celebrex is a very good anti-inflammatory which will work for some people but on a level which will control the inflammation but not necessarily the pain. It can be taken with quite high dose painkillers and it would maybe be worth asking your GP to add painkillers into your mix rather than taking the Celebrex out. It's just a thought.
With regards to work, you can still claim ESA if you go off on the sick while your disease is very active. It might be worth you looking into it.
good luck
rita