Hi this is my first time here so I thought I would introduce myself and give a little bit of my back ground and my very long journey that has brought me to where I am today.
I was diagnosed with JIA back in 2001, even though I had been having problems for a while with one of my knees it came out of nowhere and totally floored me to hear the words "you've got arthritis" I was only 18 at the time and i felt invincible as you do at that age so to be told that I now need to start treatment possibly for the rest of my life and start to think about protecting myself from long term damage was a very confusing time so I did what any young lad would do, I parted harder and thought I knew better than my dr.
My rheumatologist started my straight away on methotrexate and something else and told me about the drinking risks ect and explained how important it is to get on top of this disease as fast as possible "ok doc"
Tablets went in the draw and off out I went to party and I had a great time being the know it all kid with plenty of beer tokens to spend. By the end of 2001 I was in trouble the arthritis went through the roof and I was finding it hard to even get up out of bed in the morning because of the pain the cocky 18 year old had gone quicker than I could say my name and I was starting to realise that I better do as the big man said right from the start.
I had to stop working for a while as my condition had really started to give me trouble little did I know just how much this disease was going to change my life
A few years had gone by I'd got back to work but only in an office as I was in too much pain to do anything physical but it still got worse and worse I'd tried nearly all the new anti-TNF and biological treatments as they came on the market but nothing was helping to bring it under control I was having steroid injections in most my joints every few months and while they gave me some relief it wasn't enough to stop the damage that was being caused to all my joints from the high levels of inflammation I had, then in 2009 the news came that I needed to have a hip replacement i was only 26 and thought my life was over all I saw was Zimmer frames and old people but I got there and it was the best thing I could have done thinking I was just unlucky I jumped back into work at full speed by this time I had a son a beautiful wife and was buying my first house so just did what any young family man does work work work provide for his family but it wasn't to be because before long the second hip was needed and a new knee I was literally falling to bits but family family family = work work work I just wouldn't learn that I needed to stop and start looking after myself until the damage was really caused when the jia had hit my spine and neck I was being rushed into Salford royal for urgent surgery to have my c1 c2 fused because it was so unstable there was a very good chance it could of damaged my spinal cord leaving me with permanent damage or worse it was from then on my life went dark
After having to finish working because of my health I went on a very long journey that has been so dark at times that I never thought I would have gotten through the hour let alone the day I felt so low that I'd failed my family, myself and felt I'd even faild the family cat (i remember being sat depressed balling my eyes out repeatedly appolagise to it lol don't ask) I was very lost, in bed everyday not going out I was really struggling I couldn't see anyway forward it was just pain pain and more pain, tablets hospital appointments, hand surgery and one thing after another that's all my life was or a long time, I pushed all my family away (even the cat) and I just wanted to end it there and then but as time went on I got a little stronger in myself and I just plodded on going through the motions untill my amazing wife of 20 years got up and told me she's had enough and it's all over! the walls and floor just closed in on me my life was shattered to bits, but the very next day I got up and told myself enough is enough life's too short and now I'm here still fighting a month or so on stronger than I was a few week ago but I'm doing ok I'm starting a new life and I'm looking for new things to fill it with so that's why I'm here really looking for advice tip tricks and possibly local groups to start meeting new people so any advice would be greatly appreciated ( ive already got a cat before anyone recommend that idea) sorry for the long post.
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WmW82
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That is a sad painful history of JIA and its effects. There should be counselling/information and advice for any close family members since most, including the person with the disease, have no clue of its effects and the urgency to get it subdued ASAP.
I hope your life can only get better now in spite of such sorrows and surgeries etc.
I read your story and thought what a strong soul. You have had a lot to contend with and I am happy to see you are getting to a better place. This forum is a great place to be as rest assured you are not on your own. I would recommend having the right family and friends around you. Journalling, podcasts, good books and enjoying the little things such as a nice walk and appreciating what we have. There are sure going to be those glum days but equally there are those bright days too. Just know through all this you are not alone. Wishing you all the best - Hessie5
I am sorta new here my self but only diagnosed with RA just last summer with inflamation in the knees then spreading to the jaw feet and hands and finaly had to quit work after 35 years. Since April I started on sulfasazaline with hydroxycloraquine tablets with a methotrexate 15mg injection per week. All that helps alot with my inflamation flares and now I have lowered my tablets to one a day and changed my diet to no dairy less meat so Im monitoring myself to see of this diet change will help. So far so good with fingers crossed as a diet change doesnt work for everyone with RA. Feel free to ask anything as this group gives good advice.
hi wmw82 ive had ra for 17 years this year so i know what your going through ive also had a hip replacement and i was diagnosed with ra at the age of 16 i still get bad days im on anti tnf treatment i wish you well you have been through the mill
It always makes me sad to hear of people getting this awful disease so young: why shouldn’t you be able to party hard at 18? Life’s not fair but you must be a strong person to come through all that. I think the NRAS site may have lists of local groups for support; wish I had one near me. My GPS were good & got me on local CBT group for chronic conditions: not a cure 😊 but did find a lot of it helpful in coping. Wish you well, you’re probably more knowledgable than me having it so long x
Thankyou for having the courage to post your story, quite a journey you have had, but your here and you are still looking forward.
I've only been unwell for 2 and a half years, it does get you down, but somehow it also gives inner strength and resilience, just like you seem to have too.
Have a look on the NRAS website, they have a list of addresses of groups, I hope you find something near you.
What a journey you have had. I hope young people and people who have had this for a long time reply to you. I'm 61 and admire where you are at. As has been said the NRAS site is really informative and people on here are knowledgeable and we all do our best to support each other. Onwards and upwards is what I wish for you. ☺ .
Hi, 👋I was 42 when diagnosed with RA, “a lot older than you” I’m now 64 and the best advice I can give you is, NEVER LOOK BACK, as it stops you from moving on, focus on what you can do, and you’ll find they are always easier ways around doing small everyday tasks, baby steps, 👣a day at a time. I wish you all the luck in the world, 🌍 never give up young man!!!! there’s to much to lose! 🤗 X
What a story and you write so well. Perhaps you should consider writing short stories for magazines as you write in a way that sucks you in and you just want to read more. 🙋♀️
You’ve had an awful time and I guess you’re wondering what happened and how did it come to this. It’s easy to get into a dark place and takes a bit of a mind shift to get out of it. Baby steps.
Have you looked at Meet Up online for your area. There are probably several different groups doing stuff that you’ll enjoy. In my area, there are groups for people that like marketing, people that like doing jigsaws meeting in the pub, pub quizzes, lunch groups, supper groups. Anything you can think of and there’s sure to be something for you.
You didn’t say if you’re working or not now, but there are plenty of companies that employ home workers such as , Enterprise Cars, AVIVA, Giffgaff, HMRC, and me 😀
Baby steps. Even when it’s cloudy, the sun is still shining behind those clouds ⛅️
Well welcome to our merry band - hopefully we can help anchor you for some of your crazy testing journey ahead and be an active part of your support crew..... though by the sounds of it we missed the roughest part - sorry about that!!!
I guess you are at the point of climbing up and out - here are some things I’ve found that have helped me but do bear in mind that your RA is infinitely more active than mine so some of the list my just be too lame to help!
The List -
Find someone trusted to talk to - preferably a counsellor, your GP can make a referral - we have a self referral system where I live called ‘let’s talk wellbeing’ - they helped by allowing me yo verbalise my worries, frustrations to someone who I didn’t see regularly and someone who didn’t feel obliged to try and fix it for me.
Get out if you can - parks are free, local outdoor gym if you can use any of the kit. Local library - if it still exists! There may be some free arts based stuff around - I went to the local hospital day drop in for those living with mental health issues ( depression was/is my key into that service) and discovered sketching was something I enjoyed - I’ve done several paid classes since and enjoy botanical water colour - a gift from my RA 😎
Sleep/rest when needed and don’t bother with feeling guilty about this - guilt is a wasted emotion and serves no one!
There may be somewhere where you can do a volunteer role a few hours a week - look for something different than on your feet in a shop - maybe there is a MS centre near you - they are vibrant communities who offer various things which non-MS sufferers can tap into - I use the HBOT chamber at ours, their fitness machines and booked a therapist session now and again (reflexology). You will have to pay a yearly membership (£20) at ours but worth it as then the treatments are far cheaper than elsewhere. I have helped out now and again and am always made welcome.
Well I’m sure there is more but alas I’ve got to shoot off or I’ll be late for the dentist..... good luck with everything, you know where we are.... “don’t be a stranger!”
It definitely sounds like you’re a fighter. You’ve been through so much but you’ve got a lot more living to do. Welcome to the forum though it really is a great place for support and advice from people who know what it is to live with an incurable disease. I would look at your local library for get togethers which are local to you. Never feel guilty if you can’t make a meeting or a planned event though. I’m really pleased you seem to have lifted yourself from a dark place and seem to be coming back into the light. Well done you I hope it continues but slowly does it. Keep well keep fighting and keep us posted.
I am still on my journey to understand who I am in my disease, but I encourage you to listen to your body first and foremost! I have RA and fibromyalgia that challenge me daily plus I'm a single mom to 3 kids! Two are grown and in the US Navy, but my ten year old has to watch me struggle daily! My saving grace has been remembering to work smarter not harder and to care for myself so my kids will have me here to care for them.
Thank you for sharing your struggles and we are always here to help!
Wow -what more do you need you have the cat in place! This site has been a great place to have a sense of humour, moan, rant or why but also makes you aware that you are not alone in many ways.
Take it slow (we all do most days) but do what makes you feel good inside and out. Even if just sitting in the sunshine with a coffee or going to the cinema.
Thank you all for the ideas and support, its going to be a long road ahead, but I'm ready for the journey and finding a place with this much support from people who understand is going to be a great help thanks again
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