Following my post regarding how people feel /think about how their autoimmune disease developed, It is notably evident that there are unanswered questions and also an urge for understanding, a requirement to speak. A need for acceptance without judgement! In my time on Health Unlocked, I have taken the wisdom of many people namely AgeCrone, Helixhelix, No MoreHeels, NettieNet, Sylvi and many others who have helped and supported so many people ( including me) forgive me if I have forgotten some at this time but you are very much appreciated for your support. It's not my intention to steal the limelight of our diseases! My god! I am suffering right now! Hence the reason to look at the people who are well educated and carry wisdom. Their advice is fantastic! My personal aim was to simply open up everyone to this part of their lives that have interfered! It's disruptive! - We understand. Rest assured we are not robots from another planet! We are same as YOU! - Heartbroken with our diagnosis and trying to live our lives "normal"! Let's stick together! That's all.
Suzie x
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Shalf
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I've no idea what your saying as i'm most definately not heartbroken in fact life is normal ! I thi k we maust bw caerful not to give people the impression everything stops because of RA. There are good treatments and a lot like me are in remission I simply live with it and do not suffer with it. Please be careful and nothing beats the informed medically qualified consultant a specialist in a disease which afects everyone differently. RA is not easy to treat as most of us know but it is controllable and the NHS does provide most of us with medications which cost a lot and work.
I agree medway-lady, and after posting, I realised I hadn't included you - so sorry! I meant to. From the volume of replies , I deducted from that , alot of people are not the same as they were. ( I'm not) - why? Because this disease is so unpredictable and (at this time- incurable). The plans we would naturally have made pre diagnosis now have to be thought of. A wedding for example - Will I fall asleep with chronic fatigue and pain? - should I even go to the wedding? Please don't make an argument out of something so small and silly! It's difficult enough to deal with our condition. I'm glad you feel normal and don't suffer. From what I read, you are in the minority.
Its not an aguement its about not being part of a pity party, I look forward and not back to pre diagnosis ( a long time ago). I do not identify with your difficulty and think we should live every day as if tomorrow isn't coming. I've had the very life threatening saddle pulmanory embolisms related to RA and each day is an addittional blessing.
Medway- lady, My thread -'Don't be A Stranger' is an inner feeling I personally have! From the very day I was diagnosed having seropostive RA, I Immediately felt the isolation. Why,? Because I didn't look unwell! That, I believe, is hard for many people. This post, is created for postivity, In that no one should feel alone in their live's. Not everyone has a husband/wife so understanding as some do. I can empathise with people who have young families/partners to care for- who want to carry on with their thing like they used to do but struggle now. I have no children however I can ( within my nature) understand other's.
Well said ML.....I don't know if I'm in remission....I have my infusions every 6 months, then forget I have a serious AI disease. If i have the odd wobble. I deal with it...but I refuse to let it rule my life.
At the beginning of the year I sort of blamed RTX for a really awful rash I developed. But I was due a month in the Canary Islands, so thought I'd sort the rash when I got home. No way will I let RA stop me getting my Winter sun. Turned out it was nothing to do with AI disease...it was a Post Flu Rash & disappeared as fast as it came.
So any newbies reading this......successful RA treatment doesn't appear overnight....sometimes it's a long old slog.....but researchers are beavering away & new treatments appear must faster these days.
Just get it into your psyche that you will get back a good proportion of your life...but you won't if you decide how you feel at the beginning will last forever.
"Just get it into your psyche that you will get back a good proportion of your life...but you won't if you decide how you feel at the beginning will last forever."
Hi Emilie, Thank you! In hindsight, heartbroken was not the best choice of words. I may have been getting carried away with my own feelings! For that- I'm sorry. I , personally was heartbroken to hear I have a disease which cannot (at this time) be cured. Having worked for many years in the NHS , I know what RA can do! On a positive, Medway-lady is correct. Treatment is far better nowadays than it used to be. I didn't know this at time of my diagnosis. I literally saw visions of myself in a wheelchair! I have hiked numerous mountains with my two border collies for years up and down and across the UK. There are medicines nowadays that can put RA into remission and/or slow down the disease. I truthfully haven't found the right one yet! But many people have.
Well to be honest I am Heartbroken. But then again I'm still new to this. It took away my half marathon that i'd spent 4 months training for, to fall at the last hurdle was devastating. I feel like all my dreams and ambitions have been paused until this treatment kicks in. It's not a pity party but an honest look at things. If I cannot tell others who suffer with this how I feel, without being judged for feeling sad, who then can I talk to? I'm used to having tons of energy to juggle my very busy & full life, now I've got to think about what I'm giving my energy to.
My friend is on annual leave at work so today i had to do all the cleaning for close up at work which means my kids get leftovers. I try and be positive about this and do as much as I can but sometimes it just sucks. and its ok to admit that you are not ok. My 2 cents.
Hi, I understand why you would feel heartbroken and many others do too. What a very few don't seem to understand is that we all had different lives before this disease! For example: You being a runner. Me being a regular walker/ hiker. That IS heartbreaking when it gets ripped away from you! I loved the hills. I walked and camped the West Highland Way with my collies. Love the outdoors especially North West Scotland.
Other people may have led a non active life - on that note, did you train for a marathon or hike the Munro's medway-lady??
So yes, I totally understand. Please say it how it is 24/7 if you want to. The vast majority of people on here are incredibly compassionate and supportive. There is always someone here to speak to.
Wow and here I am relieved that I had an answer to chronic shoulder pain, yes the different meds give me a hard time but the alternative could have been worse, morning everyone,
Hi Shalf. After contracting RA just like my sister and having sudden horrible times, my Rheumy put me on the exact medications as my sister. And within two or three months I was virtually symptom free. Three years later it is only a minor nuisance but still there. 20 mls of methotrexate and plaqenil keeps it at bay. Hope this helps. Battle on and good luck. Cheers Saynso.
Thank you so much for this. How interesting and helpful! Your correct, it is a battle and very draining and frustrating on everyone trying to find medication that keeps the inflammation calm. Brilliant you have got there! What a successful story - long may it continue! This was the thinking behind my recent posts! The personal experiences and journeys of everyone who has an autoimmune disease. I believe this is really helpful. I , and numerous others are well educated and have the knowledge that each drug can or may respond or not respond to different people. Challenging indeed but a battle I personally will fight!! Strength and courage to keep going! Being mindful to be kind to yourself too along the way!! Best wishes to you and your sister.
I'm sure my PolllyAnna attitude must get up a lot of people's noses.
I Know I am fortunate in that RA has has in a way been kind to me as although I have had chronic pain, I haven't had any internal organ damage, & that is certainly much more difficult to cope with.
I can only speak from my own experiences..... About a year after diagnosis I was walking with sticks...couldn't drive a manual car because wrists & ankles couldn't manage & it suddenly dawned on me that only by listening to my rheumatologist was anything going to change. I admitted I wasn't a genius & couldn't sort things myself,
So with very bad grace I took the ruddy pills & Steroid injections ......& very slowly thing improved....then went back to square one lots of times, but step by step ...OK after a LONG time...I am now
In a bearable place.
Nothing is perfect, but I can look after my house & myself, drive,& fly off to Timbuktoo if I feel like it.
Yes of course I have days I wish RA had not been assigned to me but life isn't fair...so I just get on with it as best I can.
Right now I'm nursing Bursitis in my hip & knee..so I'm stuck on the sofa on ice packs....hence all the Rubbish I'm writing on here!!!
Timbuktoo is in Mali in West Africa! NOT on my Bucket List!
It's just an expression......last place in the world I would want to revisit is West Africa......I should have said Grand Cayman or Capetown or the Florida Keys!
But only if won the Lottery & could fly First Class....no way could I sit for 12 hours in Goat Class seat ....I struggle with 4 hrs to the Canary Islands!
I stay outside CapeTown where it is still "reasonably" safe....but I wouldn't go to J,burg, Durban or Pretoria.......but as I said unless I win the Lottery I'll be sticking to Europe!
Read the news now on news 24, fed up with carrying firearms that’s all I can say apart from friends family killed in hout bay, while in bed,my aunt and whole family held at gunpoint. Two killed by police on drive in Tokai. My home is stunning there in Noordhoek but the political situation is going to change big time because of BBBE law
Used to live in sterling crescent kzn beside Chinese embassy, no crime there just monkeys destroying everything, and nottys too but mainly northern and southern central Africa and DRC
Ek praat 'n bietjie van Afrikaans. 😉. Especially the swear words😂. Our friends live in M’tuba. So we travel with them to the Kruger. That’s where we are meeting up with them first before we go to the Cape.
11am is probably a bit early to crack the tin of Castle’s, but what the hell, it’s a holiday. Light up the braai and throw a kudu steak on it. I’ll be there😉
When I find a particular photograph I am going to post it. While I was in the north of Bots one day driving from CT to Kalumbila via kasangoola ferry in livingston I was desperate for a pee and stopped, huge mistake as there was a lion behind me and a bull elephant across the road. How stupid I was as I even took a photograph of my new bakki.
I did post some photos on here of my last trip to the Kruger. A couple of years ago, so you’ll have to go to my status, or whatever it’s called on here, and have a look. That’s the only drawback on here, you can’t post photos without starting a new thread.
These RA meds I am taking are causing eye problems when I take the higher dosage, hmm maybe had better email my support network and go back to the lower dosage
Enjoy! It's a beautiful town! I used to stay out at George..right on the beach, but I can't face the long flight these days. I'm exploring places closer to home......5 hrs flying time is my limit these days.
LOL i knew we were kindred spirits of a sort [pollyana- ish]... just got dna results, mainly devon dorset european inc Danish ['always look on the ..]. hope the bursas are improving xox
Can't make up my mind whether to ice them or put hot pads on them! So trying both!
See surgeon next week...hoping for steroid jabs, but I spoke to a friend who has had them on both hips for years. She said they calm down but then return & doesn't recommend the injections as she thinks they hurt more when the steroid wears off......& as they come back why bother?
Hi AC [think i'll add a salutation when i post.. getting grumpy at unaddressed people replying .. 'likes' or additional comments are fine tho' ] could being pedantic be a new side effect of my infusion LOL??
Anyway - are heat pads ok for bursitis, i thought the idea was pack of frozen peas for 10 mins max at a time? . touch wood mine on elbow has gone for now.
good luck with steroid jab , hope it helps! . Best x
That's just it I don't know...never had one before..now i have two..hip & knee! Ice does seem to help....but it wears off very quickly.
I too am fed up to the teeth...with HU...it asked for my PW again this morning ...then when I click on notifications it disappears before I can read it....& as you say replies come back that have no connection with the subject.
I am not the same person that i was before i was diagnosed. I always expected to look after my hubby,after all he is 12yrs older than so why wouldn't i but here i am with my hubby taking care of me because of RA and all his friends that came along for the ride.xx
He would love that when i tell him when he gets home,he is away with the British legion going to the Menin gate in Belgium to remember the war dead with our daughter who is carrying the standard for our branch and hubby is laying a wreath. My friend has come up from Horsham to stay and look after me while they are away,so as i don't go stupid as i am quite capable of that i can assure you.xxx
Aww Sylvi, I have read your posts since joining here as a member. You lift me up! A true angel! And your husband? - well you have spelled out his heart! Lots of love to you both! and your daughter. xxx
Ah but in your head Sylvi you are still that Bobby Dazzler your husband was bowled over by.......& as long as you think like that, RA will not define you.
But please try to take it easy at least some of the time!
Yes we do!! Haha - let me begin.... Only yoooo, can make this world seem right - only yoooo - can make the dark seem bright, only yoooo and Yoo alone can fill us like you do and give your heart with live for only yoooo.......😁 - GO! X
Rather not, as in real life I'm part of a real choir !
I definitely don't feel like the same person to be fair. And I've never asked for pity! I'm not the same person. I can't do the things I used to do or some of the things I want to. I adapt though.
Some folks are lucky to have remission, some are not so lucky. None of us can fully know what another person is going through, because we are all different. Some have family support, or community support. Some folks live alone and are isolated by their illness. For some the treatments work, for others they don't. Some folks can't even afford the meds!
Realistically (for most people) finding the right med is a long and painful process. It's a rare person who finds the sweet drug straightaway, with no side effects. Most people on here seem to have gone through, and are still trying various drug regimes.
It sure ain't no picnic. I might come across as a happy go lucky, try anything kind of person, and I do my best. However, I've had some serious wobbles, shouted at a few trees, and the occasional person. Pain and frustration for years on end can wear down the most positive of souls.
It's good to be positive. It's also Ok to admit to struggling.
An extra add on...life doesn't care who it smacks with autoimmune issues. It also doesn't care how many it gives you, or if you've already had your fair share of illness. Life doesn't care how young you are either. I feel bad for children and young people who are hit with this awful illness. They should be out having fun and getting up to mischief and not feeling pain.
A good support system is key to recovery. That includes having places like this site where we can all share the positives and the negatives, and also the funny, mundane and 'normal' whatever the heck that is.
It can some times be tricky to remember who you were before the illness. One suddenly becomes a series of malfunctioning body parts. You get prodded and poked, and no one has the time to ask who you are. You somehow have to cling on to the 'who' yourself. Of course it's possible to gain back some of who you are, but it takes time, resilience and determination. Some folks are naturally more resilient than others. It all just takes time, and self knowledge.
So much better to say what it is in clear speach. Not facing reality of the illness and struggles with meds to find relief is not in my view of real help to anyone. We can learn from the experiences of others but our illness and how treatments work is not defined by the experiences of others.xSimba
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Hi
I would give your post 10 likes happily! I think everyones experience should be respected, whether they have gritted their teeth at their RA, gone into battle, gone into denial, had a melt down, or alternate between different states.. Its all valid and OK!
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Thanks for that Nettie, I really like your perspective and that post has helped me a lot
What a great post, you hit the nail right on the head. Fortunately it seems I am one of the lucky ones found the right drug first time. I’m on Methotrexate as I have psoriasis RA it has made my skin look so much nicer not been this smooth for years. The morning stiffness is much better and I seem to have more energy. I’m also lucky in having a wonderful loving caring Husband who does so much for me, who I appreciate so much, since I broke my ankle two weeks ago he has spring cleaned the house from top to bottom, done some painting so it will be nice for me when I get home from hospital. He has taken time of off work to do all this. He will be there for me when I get home, he’s boss has said to take as much time as he needs up to six month. I feel blessed to have found my soul mate. I know some people never do, and have no help even when there are people around, it pains me to hear this, when I have so much. Any way I’ll sign off now, wishing every one a good pain free day. 👋 buy
I will not be beaten. I struggle like mad but although my husband helps me enormously I am stubborn and try to be independent. My sister worry so much .my husband does but doesn't show it so much .I am just grateful they are there for me but it upsets me that my kids aren't as caring and never ever offer to help or visit u less asked to come.I like to think I am still a teenager at times even thou these auto immune diseases keep adding to my collection plus other bad health issues.
I definitely can't do things I loved to do so no more hiking up mountains for me and yes it does depress me at times when I look back to what I was like a few years ago but we can only go forward can't we.
But we also have to be realistic as this brings with it contentment and good mental health, which as we know can be a big problem for people with RD. So yes, look for things that interest you and push on, but acceptance is also a part of recovery.
Yep, I know how you feel about not being able to hike up mountains anymore.
I was a fit fella and used to love going out birdwatching with my dogs, and roamed for miles in the hills surrounding my home. Also, and to the disgust of many, I loved being out in the woods moth trapping 'til the early hours. Alas no more, but I have managed to find a few things to keep my mind motivated. As you say, we can only go forward.
The children part I can relate to, I know they have busy lives and children of their own. I don’t want help from them just to see more of them and my wonderful grandchildren, and a phone call more often. as they do live a long way from me, my husband would say there you go again making excuses for them.
I would hate to think that we can’t talk about how RA impacts us personally without someone objecting to our views especially here on HU. It’s bad enough in the ‘real world’ without being misunderstood here. People have vanished from due to thoughtless interventions and that’s a real shame.
Well said, I have also been appalled at some of the hounding some people have had on here who have different views, but a kind heart. We are all different and at different levels. Surely the purpose of this site is support however you take it. It takes very little to be kind and makes a difference to so many of us. X
My Mum used to tell me if you can’t say something nice keep it shut. Meaning mouth, as manors and kindness cost nothing, people with have different views from you from time to time, and a little bit of tact and diplomacy plus thought is all you need, and back down and agree to disagree before a full blown flare up. How wise I’ve found that chat with my very wise Mum, who I miss every day.
It sounds like we both had lovely Mums, I was brought up with wise words, lots of love and taught good manners. She also used to say if you have nothing nice to say, say nothing. My Dad was a great man too, but was in the merchant navy so away a lot. They both died young with cancer and I miss them, especially my mum. She was around when my sons were young and was involved with them a lot. I have five grandchildren and I have been involved in their lives, as we all live near to each other. They are my joy, all doing well and 3 driving, so pop in when they can, if not get a Whatsapp. I do hope you are doing well now, are you home yet what an unfortunate accident. Glad you have a lovely hubby. Take lots of care. X
Yes both my parents died young, my Mum was only 57 and only saw my daughter for the first three years of her life, my Dad was 67 died of a heart attack. He was around quite a bit when I was a child, and I was Daddies little princess spoilt rotten, I feel for my two brothers now, although he did have a lot of time for them. He was a wise old owl too, manners he would say if we did something wrong, no elbows on the
Dinner table. I unfortunately don’t see my grandchildren very much as they live far away from me, when I get out of hospital, my Son will straight round with his family as I haven’t met the baby yet he was born a few days after my op, and me my Son and his Wife are anxious for me to met him. He made number 7. My eldest is only 9 years old.
Sorry I’m rambling. Thank you for your reply and kind thoughts, hope your RA is not to painful take care
Hi Chris. What a wonderful homecoming for you meeting your new grandson. I do hope its soon. I do know how lucky I am my family have stayed close by. My eldest is 22 two are 19 and two are 17. Have loved every age, even those awkward years when they hit puberty. My mother was 58 when she died my father was eleven years older than my mother and died aged 62. I am hoping to go back on my RA meds, I have a leg ulcer, almost healed, waiting for the results of my blood test Friday and if not showing an infection, I can start them again. All the very best to you and your lovely family. G X
I haven't been on her for a while and certainly not because am well more because of being in a dark place. We always look forward to seeing our consultants but for me it's always bad news. Deterioration of this disease is all i ever get. The gift that never stops giving.
Taking 36 pills a day injecting once aweek and every 4 weeks off to have an infusion of meds. Sometimes it's hard going and as much as you look for the positivies and reasons to keep going ot sure can be hard.
I tell myself every day is a new day which brings new things. To try to keep going. But sometimes it's not enough and i do feel like giving it all up.
But then i came to this beautiful place words of wisdom, encouragement, support and love . You all bright up the day, tje out look.
With your pics eords of encouragement And words of wisdom.
Sarah big hugs 🤗 keep your chin up, look at todays as it’s beautiful day, the sun is shining. as the Queen song says, let’s hope the pain is minimal. Chris x
I suspect most people go through a kind of grieving process after diagnosis. I know I did...still am!
People are often frightened, particularly when they don't know what's happening to them. It's the loss of control, at least it was for me. I began to feel better when I knew what I was dealing with. The not knowing was hellish, so too the thought that it was all in my head and I was simply going nuts! Let's face it, for some types of arthritis it takes a very long time to get diagnosed.
There's also the anxiety of loss of earnings. Poverty doesn't make a person happy. I've got to say, I'm hugely admiring of single parents of young children who go through this. Not sure I could have done it. Now that's what I call tough!
I love that. I used to do a bit of music with the younger children at a school when I was fit enough to do so and would have loved to have known "The Skeleton Dance" in those days to do it with them.
I am really struggling with my health problems and the intense heat doesn't help either. I can no longer walk more than a few yards and can't get in and out of a bath etc or get dressed without help. However, we are all different and have varying degrees of the illness. We have to be tolerant and realise that we are all so different, with different feelings, different needs and other problems etc that may affect what we are dealing with.
Yes Shalf, it was last week and she was very good and listened to all I had to say but wasn't able to help me much. She said that at present, my OA is worse than my RA and that she would refer me to a combined clinic where I will see the orthopedic surgeon and rhuemy at the same time and she feels that the time has come to replace both my knees as they are rubbing bone on bone. She is also referring me to the pain clinic. I used to go there but it was quite a few years ago now. They used to do massages and acupuncture which helped me but I have heard that they no longer do massages and that the acupuncture has been cut down a lot and they say that it doesn't help back pain.
Oh my goodness! Poor you. I didn't find the pain clinic very helpful. I was given a tens machine that did nothing but annoy me with the noise! No massages or acupuncture. That's good re combined clinic.
Your first post on here sounds like you would qualify for PIP if you are unable to work.
I am past retirement age now Shalf but had given up work through ill health many years ago anyway and yes I do know about PIP. Thank you for trying to help.
I'm not looking for pity, far from it , but I am not the same person and cannot do the same things as I did pre diagnosis. The life I live now is mark 2.
I have taken up a few more quieter hobbies, things I can do at home. I try to get out most days even if it is just for a short while, I try to socialise as and when I can...but my life has altered unimaginablely and to suggest things around me are just the same and that I can do most of what I did before, or similar type things, by managing my condition, is to me ...denial.
I have tried my best to adapt and I remain happy, in that I am not depressed nor have depressive episodes. But my life is not as fulfilling and I do get pangs of sadness when my family go skiing, climb a munro at the weekends, take my new grandson swimming and I can't join in as before.
I am now medically retired , my career was a huge part of my life...early retrial has brought with it a change to my self identity and brought financial concerns that I would not have otherwise had.
My first grandchild was born 4 months ago, I am not the active , outdoors grandmother I had hoped to be. I will never be able to climb his first munro with him or be on the ski slope when he learns to ski (assuming he does these activities, maybe he won't and I will look after him when the rest of the family go !)
My hobbies were all physical, long distance walking, nordic walking, hill climbing, swimming. I clocked up 30 miles on a quiet week and 40 plus most weeks. I skied in the winter.
I loved the outdoor life, camping, travelling, rented camper vans most years. I travelled independently all over the world, North of the artic circle , south of the equator and most countries in Europe, Russia etc etc
I can do NONE of the above now....so no not pity...but acknowledgement from others that I am not being lazy or seeking pity, but I just can't do them.
I have started to research family history (very interesting and something for my grandson he woukd not otherwise have had....so what ...I hear myself say ?!!!!), I go to the spa, I go to the cinema regularly, meet freinds for coffee/lunch (rather than dinner), I have taken up photography, I have 4 new pen friends via a NRAS initiative , I feed and read to my wee grandson...and have just returned from an independent holiday in Scotland. I am holidaying in the north of Scotland later in the year with my partner.
Will I be hill climbing...no...neither will he
Will I be snow walking ... no ...neither will he
Will I be camping out overnight to be in amongst the sheer magic of the rut ...no ....he will ...I'll stay overnight in the house on my own.
Will I outdoor winter cook...I'll try with the help of my partner...but I could not do this on my own without exhausting myself and have payback days.
...and I could go on.....
The holiday is almost twice the price...as I cannot be in the wee basic cottage we have rented for the past 8 years, it's just too cold, too remote and too much work keeping coal fires lit. So the bigger centrally heated house is required. The holiday will change with this accommodation change. The ruggedness will go and there will be no more naked running around the cottage late at night, wellies excepted (too much information).
I can't tolerate alcohol since being diagnosed, so no more late rambles in the hills (I'll never forget seeing the aurora borealis, or nearly being caught in a red deer stampede) and home to the coal fire with a whisky, before heading to bed....how much I miss that....the sheer exhilaration of it all.
So yes, this disease has beaten me. ..I was not a sedentary person who underlook sedentary activities, or gave a thought to... should I ? I just did and then dealt with consequences, how much I loved the elements of the unknown, the freedom...I can't do that now, physically and without a real risk to myself and the fallout to my partner and family if things go wrong. Planning is now the key to the little independence I have, and I accept that part.
I am a different person and have had to become a different person to survive and reshape my life into something acceptable with RD, but I preferred the life I had. If anyone has managed to keep most of their life pre RD, that is fabulous and I'm am pleased that treatments permit you that freedom but you are one of the lucky ones in that treatment has worked for you to an extent the you can still do. No offence to anyone intended.
I’m full of admiration for your past and your present. You show a remarkable, emotional adaptability towards how your life has changed, and I sincerely mean that. I’m stuck in the battle of not giving up, I hope that the battle will continue for a while. If I fail, I hope I have the wisdom, serenity and acceptance that you have. Thank you, cheers Deb
This is exactly what these threads are about! Opening up with courage and not feeling fearful of judgement! Yes, it's human nature to not agree sometimes but tact should be applied especially on this forum. I truly hope everyone stays. It's sad and quite frankly - WRONG that members have felt the need to leave HU due to lack of diplomacy! Autoimmune Diseases affects everyone in different ways. Our journey and time with the disease are very different. Many people were diagnosed years ago and have come to terms with it. Many people have just recently been diagnosed and are, as understandably expected to be. I feel I have found friends on here. This forum makes me happy!
Yes Mmrr it is so very sad. The things we have loved so much having to leave them behind. I suppose it is a process of mourning we all need to go through before we are able to give our new existance a chanse and find new things that makes life worth living again. x Simba
I've never really felt depressed, had some low times and yes a bit of mourning. But I feel I have coped well with what has been thrown at me but i am a very different person than before RD.
Me too Mmrr. Really appreciated your input to this thread. Although we are all different your input shows many similarities to how I am progressing with RD.
My rheumy said for me to stop looking back and look forward and to be the best I can with RD. I found this harsh, but helpful.
Hmm. I read your Rheums comment with an ouch. It seems a bit simplistic. i think to accept what is 'now', has to involve at least registering what is no longer now, at least currently-(this is confusing in itself), before it is possible to look forward. I read a book 'Living with the Enemy' (living with chronic health diseases, not troublesome housemates/family), which I thought was quite good. I am not sure at what point it is good to read it though. That the trouble with books, useful for some people at some point, maybe...
I must say I found hi bluntness helpfull. At another appointment he said I was driven, to which I replied I was not but I was focused and task orientated. Mmm on reflection both very similar. The guilt and frustration of not doing what I used to is the greatest challenge and every time I saw / see him Im full of questions, whats next, where to go from here, how do I get back to where I was et etc. Thus I found / find what he says harsh but its the best way to deal with me. I need to know, and I need to know where I stand as Im a planner. I dont think im unusual, its just knowing how to deal with me. I find it positive as for months I was so exausted life happend around me so to have the energy to be 'driven' I see as positive. Just my reflective thoughts.
I think it is still early days for you? A year or so post diagnosis? I really, really hope that your docs will find the combination that works for you sooner rather than later and you can get back to dancing in your wellies, or at least something closer to the way you were.
Thank you , but my rheumatologist said is probably as good as it gets (I have a lot of underlying pathology too). But I am having a course of physio from the NHS to try and help me maximise what I have.
I was really trying to say for some of us, we are different people post RD and to be able to survive, acceptance is needed of the situation we are in and to stop struggling to get back to past times. Just make the most of what you have.
Yes, absolutely. We have what we have, and we can't change that. I guess I'm not suggesting that people aim to get back to past times, but over the last 8 years I've seen people who don't push their rheumy hard enough to get them to the best possible place for them, and that makes me sad. They accept what they are first offered (or sometimes not offered) and don't believe things could get better in any way.
Very moving and I'm glad you said it. It's tough when an individual has always been physically active. I was a bit like you. I can still wild camp, but I pay for it. I don't think I'll be doing any fell walking anytime soon, unless the biologicals work!
I'm sorry things have been so tough for you. I bet your grand baby keeps you going. I haven't got any yet. Looking forward to that!
As we age things stop working so well...it's just all happened way before many of us expected it to.
Somethings are better though. I no longer care what people think of me. How freeing us that!
I think the use of the term 'pity party' was a poor choice of words. It was a bit offensive really. I don't think I've seen a single person on here who wallows in self pity. I've seen people struggling, and bounce back. And sometimes we complain...well I do anyway. That's just the nature of the beast.
I also see loads of positive posts and lots of help and support. That's good
Hi Mmmr,/ Everyone. I am looking through my posts, reflecting on last few days/nights. Feeling inspired and hopeful with some of the posts and sad with others who are in a lot of pain. I think a lot of people will be aware now that I retaliated a few days ago on this thread to one of the posts. The reason it struck a nerve with me was because what was said was exactly the very thing I didn't want to happen on a forum like this hence the title - Don't Be A Stranger! ( Lonely in thoughts & feelings). Mmmrs post is very open, honest and heartfelt to which people responded with understanding. It is a shame the first sentence began with "I'm not looking for pity"! No one has to say that. Words can hurt more than a punch sometimes! Many people are sensitive, I definitely am and sensitive of others too. If I am crying with the thoughts of worry re my condition and my future, crying with pain or anything that I feel upset about, I want here to feel like a sanctuary for healing. To feel we can feel sorry for ourselves sometimes. To be accepted to express freely and to know we will do our utmost to support one another. I sit in between positive forward thinking and negative past thinking. Whatever the mood, everyone should feel free and safe to open up. I hold no grudges and hope to see EVERYONE united again.
Loved reading about you .you have lived such an excitin energetic life.I have done some of what you say but definitely not running naked.I admire you for still finding lots of other great things to do and adapting to your disability.
I used to work in a nursing home for the disabled a few years ago.I loved listening to stories of their lIves. I vowed then to myself to do what u can while you as you never know when u can't. Not knowing then that bad health would soon strike me down.
It is sad, but then throughout my life things have had to change for one reason or another - sometimes good changes, and sometimes not so good.
I have been lucky in having good rheumatologists and a good metabolism so the treatments have by and large worked for me. I've also worked at it, and had to accept as Mmrr says that planning is a key now, not spontaneity. So no my life is not the same as it was, but it's ok and most times RA is not an issue and I don't even think about it much. I'm also 8 years older than I was - so impossible to tell what is due simply to age!
I don't know, I must be an oddity, either that or numb! I didn't grieve for my health, I was just pleased there was a reason for the pain I was in & that there was something that would work on it. That doesn't mean I'm blind or not empathic to how others may feel, it's just I'm the kind who takes things in her stride generally so maybe this is the difference. I'm also constantly researching, hungry to be continually educated in anything RD related. I don't allow it to be disruptive, I work round it sure but it won't stop me living my life as I wish to live it, I suppose it's contentment. It may help that I'm pretty well controlled & 10 years in of course but I don't recall any time that it stopped me enjoying myself, except for a 3 month hiatus when I wasn't on any meds, even so life continued, a slightly slower pace than my normal snail's! Kidding of course, I'm no runner but I never have been.
We just need to bear in mind that everyone's coping mechanism is different, acknowledge there are various ways of treating RD (& associated conditions) & be sympathetic to those who are really struggling. We're a happy band once again & it's nice to come on here safe in the thought we can share without being challenged for our choices.
Thank you for your kind words Suzie, if I've helped just one person then it's worth me being here. I must take you up on wisdom though, in my case it's experience I share generally, I would never consider myself wise... more that I've lived with it & read up on it so long, enough to be able to share my knowledge. 😙
I concur with much you have said ! Do I want to be more active ...yes, will that happen most likely not, hence I just need to get on with it. I'm not sad, but my past life was more fulfilling.
I know drugs for one doesn't always work for another but you sound very well controlled. I don't feel the Baracitinib is working for me now. It did first two weeks. My mobility is getting worse. x
Methotrexate has been the mainstay DMARD, been on it 9 years. Because of issues when I've gone higher than 17.5mg I've tried double therapy with sulfasalazine & then leflunomide. SSZ I had problems with & LEF didn't work & also caused peripheral neuropathy & bilateral CT Syndrome so both were stopped. As hydroxychloroquine was my first DMARD & took it for a year before it stopped working we were running out of options so I agreed to trying to increase the dose to 20mg & fortunately I've had no repercussions & it's held the RD.
I believe being diagnosed & starting treatment only 6 weeks after first noticing symptoms has stood me in good stead, I've incurred no damage & the only erosions on diagnosis were in my feet. They do remain my worst affected joints, ankles too, but crucially no real damage, not enough to warrant pinning or joint replacement. I do have problems don't get me wrong but regular visits to Podiatry, custom made insoles & proper fitting footwear help a great deal. I wouldn't like to be without my Blue Badge on the days they're giving me proper gip though. But hey, I'm fortunate compared with some. Do you have one Suzie? Just thinking with your mobility affected so it may be a great help for you too.
Bit of a long winded reply but there you go! If baricitinib isn't going to the one to bring you under better control I hope the next choice does.
Thank you! I think there is less risk of erosions and damage if treated early. I wasn't unfortunately. I have synovitis present in my shoulder joint which I was told the pain I was feeling was a frozen shoulder by the NHS physio. I was never blood tested for RA when pain first occured 3 years ago! Just given painkillers and ibuprofen. I sought advice in a private physio clinic about my shoulder. She said it wasn't a frozen shoulder but possibly a rotator cuff bursitis. She was right. I got a scan through NHS and that revealed a rotator cuff bursitis. A year past March when my finger swelled up A LOT I was blood tested at hospital and was told I have high levels of Rheumatoid factor. I was also told that the type of pain in shoulder was likely the start of the Rheumatoid! I was given an urgent appointment with the Rheumatologist and aggressive RA treatment. Will try for blue badge, it would certainly help. Actually flaring now :(. X
So late diagnosis, or rather a possible missed clue from three years back, applies to you. If only your GP had read the signs & checked your blood for RF & CRP/ESR before referring for physio, but we can't turn the clock back would that we could. Yours is a prime example of why GP's were sent a toolkit, aiding the look & test for the classic signs, so why didn't yours pick up on? Anyway, it's history unfortunately for you so now it's a case of damage limitation (no pun intended). It's so annoying though.
Do check out info on Blue Badges, I'm sure having one would really help you. Have you applied for PIP? If you receive the mobility component you automatically qualify. x
Yes, late diagnosis. It appears to be a logical reason as to why some people have different levels of symptoms. I was baffled in the beginning to be honest. I had limited knowledge of Autoimmune diseases. There was no requirement to go into great depth about any condition in my line of work and the priority was patient care to hospital.
After I was diagnosed I soon sought support on here, I couldn't get my head around why some people were suffering quite intensely and others had relatively normal lives and weren't suffering to much. I wanted information from others who had AI diseases. Dr Google was like opening Pandora's box! The GP and Rheumy Dept didn't have the time I wanted/needed to investigate my own condition and others. This forum has been very helpful. The Orthopedic Consultant unfortunately didn't pick up on the signs of RA which I know now is a red flag when all else fails. I was treated aggressively with DMARDS which my gut disliked very much! It's been one step forward - two steps back scenario hence very difficult for me and some others to move forward like other's can. I understand this. No matter how positive minded we are, if our body parts aren't functioning properly our minds can't do the physical work. I want to focus on getting stable with my health. From what I've read re PIP, it's a stress I could do without at this time. Thank you for your support once again nomoreheels Xx
I have learnt a great deal from you nmh, and I thank you for that. I have/am grieving for the future that was planned and at this moment since RD is no longer. Due to collapsing with RD etc etc I have not had any choice but not do what I used to. I must say things are much better than they were and im a work in progress, but I do agree with Mmrr and with you....im a very positive person and have also been nicknamed a 'pollyanna' as have others. Positivity is good but it doesnt take the pain away but it does help you deal with it and to rethink ways of what you do or how you do it.
Exactly! Positivity won't take the pain away but it is a really big aid to coping & working out alternative ways around things. Just describing yourself as being a work in progress is a positive, so it proof if it were needed that it works! You go girl!! x
I hate it with a passion I’ve lost my beloved job because of it I’m getting no we’re fast with the drugs am I suppose to be ok with that no chance . No one in my house really gets it .. it’s one big huge drain on me. Apart from that yes I’m FINE 🙂
Hi Vonnie, I completely get your frustration. There are very few people outside of this site in my experience who gets it... It can be very draining indeed! I am in the same boat as you re work and drugs.
Shalf isn’t it sh@t I went the job centre today since I was 17 I’ve worked I’m no 52 , how did I end up in this situation ? I just want it back to normal, the man behind the desk at the JC was so miserable he had a face like a smacked kipper I think he needs to hang is boots up. I made a joke I said I feel like Daniel Blake (the movie ) I Daniel Blake he didn’t even look up, how embarrassing on his behalf thinking he is better, get a life miserable get.
Shalf I’m past caring now to be honest I give up its took my job, good job I’m not in Daniel Blake’s boots god forbid I bet there are many like that, I do have moments were I think what if this or that with my health but you shouldn’t worry about what tomorrow will bring, don’t think your getting a sorry for Medway lady . Night mate.
It hasn't taken your friends on here though! Can you imagine life without real understanding from others who know too well how it feels. That's what we should all appreciate. NRAS- HU has been a huge help to me and still is !
Well said, 👏👏people without this crippling disease don’t understand how much pain we are in, as you say we are not moaning it’s just painful. At the moment I am battling not only with both OA and RA, and diabetes, I have a broken ankle. Thankfully the diabetes doesn’t cause pain but it goes erratic when the pain is bad. I have had my op two weeks ago Monday so my big Frankenstein foot case will be replaced with a boot I hope.
🤞. and I may be able to go home. Where I’m sure I’ll be able to get back on track. I have psoriasis RA since taking Methotrexate my skin is soft and silky not been like this for over
30 years, most of my RA is in the top half of my body, and having to push up with my arms with
this leg as it is, is what’s caused the pain. I look forwards not back. Am a happy buoyant person and take things in my stride, it was a blow to be told but hay ho it’s just something more to contend with, but it doesn’t take away my pain that I have. Thankfully I have a wonderful loving caring Husband who will do anything for me. A lot are not so lucky.
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