acceptance

Wobbly

Hey
At what point did you guys realise and accept what was wrong with you and how your life was gonna change? Was there any 1 thing that made you sit n think oh my word this is actually happening to me n this is my life - if u know what i mean

Wobbly
Xx

stickywicket

If you look at the top of this forum you'll see a permanent (sticky) thread entitled 'Topics with suggestions for living a positive life'. One of the threads it contains is on acceptance.

For me it's always been an ongoing thing. As a child I had asthma and couldn't run round as much as other kids. I had a lot of time off when diagnosed with 'probably rheumatic fever', aged 11 so I was even more different from other kids. The RA diagnosis came at 15. I did my exams (O-levels through to finals) differently and did motherhood differently. I now do grandmotherhood differently.

I've always accepted that arthritis modifies my life but never accepted that it dictates the essentials. I do things differently, that's all. And I still have to keep changing how I do them. It keeps me thinking if nothing else

Dragonfly17

Hi Wobbly
I was diagnosed last July after 2 months very painful/swollen joints where I was unable to dress myself or cut up my food and I have to say by the time I had a diagnosis and was given steriods after taking numerous meds which had no affect whatsoever, I was happy to know what was wrong with me and once the RA was under control I found it easier to accept. As time has gone on I have found how restricted my life has become compared to before but I am just grateful to have the swelling and pain under control. Perhaps it has been easier for me to accept as am 66 years old and know that life was slowing down for me anyway. I have found ways around doing things which makes everyday existence easier and it's only occasionally I forget and then my joints let me know.
You don't say how old you are but you sound like you could be young, don't let it rule your life work around it and with it, take each day as it comes and learn new ways of doing old jobs.
There are plenty of people on here with a vast experience of the problems experienced and they are always ready and willing to help, just ask.

AliB

I had ache/ pain in my left left leg for years on and off but put it down to maybe to aches and pains sort of thing of getting old then my restrictions of movement began and so I suspected it could be arthritis...however the pains got better so it didn't bother me so much although was bit annoyed I couldn't bend down to tie shoe laces up on my left foot without a struggle...then my right leg started getting a bit achy at times and bit painful in the groin area..then both started getting uncomfortable at night then last summer I noticed I was getting uncomfortable when walking/standing around...kept moaning to hubby who kept telling me to go to the drs but I kept putting it off until just before Christmas I met up with a friend who told me she had very similar symptons had some xrays done and was told she had arthritis in her hips. ...that spurred me on too and made a New Years resolution to go to the drs...had xrays done and was told I have severe arthritis in both hips !! I am due for the first hip op in June. Now I oh so wish I had gone to the drs back in the summer as I would most probably have had at least one of my hips done by now and be waiting for the second. Now I'm really restricted as to what I want to do now at the moment and makes me so frustrated . As for my friend she was told hers was not bad enough for hip replacements... say she was surprised and not a little envious when I told her !!

frogmorton

I think this business makes acceptance a little hard.

Because it is a gradual thing, the kind when you look back and think "I used to be able to...." Now I use a walking aid or get my husband to do this that or the other for me.

Initially when I woke up stuck in agony in one position, (first big flare), I was terrified this would be me forever especially as it went on for weeks and weeks. My kids we very young. At that point I accepted things quickly and was very down. The pain was so great even the sheets on the bed hurt my bones.

Since then and thanks to medications things have been so much better and things worsening more steadily so acceptance happens gradually for me.

I think you almost have to grieve for what you thought life would be before you can adjust to what it is now.

WAY better than I had feared

Love and ((()))

Toni xxx

palo

Obviously it is your life experiences and outlook on life that will determine how and when you get to acceptance. It is a stage we do have to get to as then you can move forward and learn to deal with the current situation. I don't believe anyone sails through life without some tragedy and heartache so what form it takes varies for each of us.

I was 21 when I had my eureka moment that happiness comes not from without but from within - it is not what happens to you or even what you do - but how you feel about it that determines whether you are happy or not. It is a personal choice - you can choose to be happy with nothing or miserable with everything, it is solely your perspective.

So what life turns out to be a pile of p*o, that is just luck and circumstance, you can still enjoy many things and focus on those rather than the s**t in your life. Life is all we know of heaven and all we need to know of hell..

Acceptance can be as hard or as easy as you choose to make it.

Good luck.

BTW I still find it incredible and if someone else told me my life story I would not believe it, but **** happens, nothing I can do but carry on.

littlemimmy

frogmorton wrote:

I think you almost have to grieve for what you thought life would be before you can adjust to what it is now.

This! Oh yes, definitely! I was diagnosed with RA in August 16 and have definitely not reached acceptance yet. I do desperately wish I had a crystal ball. Will I be able to carry on working? Will my career progress as I've planned? Will I be able to have children? Will I ever be able to start my hobbies again?

For me, it seems to be a gradual process of each joint at a time. For example, my hips have been painful for about 15 years, so I've already learnt to deal with that. However, the pain, weakness and stiffness in my wrists and fingers is getting worse, and nearly had me in tears in a restaurant the other week when I struggled to write and it hit me that one day I may barely be able to write at all.

As someone who has struggled with depression for most of my life, I very much disagree that we can choose to be happy, but I think we can try to make the best of things by learning how to manage our conditions and, as sticky says, working out how to do things differently.

Rach101

Hi Wobbly
I've only had arthritis for a year but am nowhere near accepting it or coming to terms with it. For me the joint pain and swelling arrived overnight and in all my joints and even a year later the swelling hasn't reduced at all. I've been diagnosed with spondyloarthritis (or sero negative inflammatory arthritis) as my joints don't show much inflammation in ultrasound although CRP has been high in the past. I don't understand what's happened to me, I don't understand what is causing it or what triggered it (tho I have endlessly researched on the internet). Some days I'm ok but when I have a flare or think about the life I used to live I get very upset still.

I don't think it helps that I had m.e. For 5 years in my 20s and was fortunate enough to make a full recovery, I feel unlucky that I've now got something else! Though I only have to read the posts on here to know how lucky I am really. For me a flare also means that I feel unwell which I've also never understood as it doesn't seem to be typically an arthritis thing but it is definitely part of my experience. at least when it's 'just' pain I can sometimes find ways to manage it but when I feel ill and dizzy etc I really struggle.

I hope you find acceptance soon xxx

stickywicket

Rach, don't try to understand what caused it. Rheumatologists don't know so how can we? Many (though not all) people with inflammatory arthritis have a genetic 'trigger'. No-one knows what it is or how it can be activated. Many who do have the trigger don't get arthritis. It's a lottery.

Just a very medically-uneducated thought - might your 'M.E.' have actually been the start of the arthritis? I know little about it other than fatigue and joint pain which both sound familiar to me.

Inflammatory forms of arthritis can be very hard to diagnose.

dalek

I have arthritis for about 25 years. About 2 years ago it dawned on me that i am not going to get better. Still not sure I have accepted my lot in life.
So the weather is getting warmer which is better for joints, but then you see everyone else doing loads of stuff when you have to sit on the sofa. Still hard to accept.
The section in the 'emotion' leaflet about grieving for the life you wanted is spot on.

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Slosh

I had my initial diagnosis about 4 years ago and for me it was very sudden, no gradual build up, just a quickly developing severe neck pain.
I view acceptance as a variable state, 4yrs on, and glad that when first diagnosed I didn't have a crystal ball have I accepted it? Sort of.
On a good day, when I'm not in too much pain, doing something I enjoy, not too exhausted etc. then yes,
Other days, even other moments, then no. I get angry, frustrated, envious and sometimes cry.

It's a tightrope, a balancing act and I still need my safety net to catch me when I fall, my wonderful daughter, son-in-law and grandchildren, my friends, GP and of course, this forum and my forum friends.

Starburst

Acceptance is a funny one, I think. I think most of us have gone through stages of accepting things as they are and realising we are going to have to learn to live with it but also, the stage of looking for the elusive cure.

My Rheumatoid hit me like a tonne of bricks. I'd been ill with proper flu and then a secondary bacterial infection. I woke up early one morning, maybe around 4 am, screaming in agony because I thought I'd broken my wrists in my sleep. I was only 21 and not terribly mature, so it was a bitter pill to swallow. Nonetheless, life goes on. It moves and it changes. We learn from all the silly things we do; the hundreds of pounds spent on "woo woo" treatments, the days I lay in bed and hoped I'd wake up well and the tears I cried in a self-pitying way.

Ultimately, you many learn to accept that you won't accept it and that's ok. This is where I am. I have other health problems apart from RA and I don't accept them. I know I'm ill/disabled/impaired/whatever but I don't accept that I can't have a life in spite of it. I accept nothing but hope. I may not cure myself with sugar water or someone waving their hands over my chakras but I hope I will continue to grow and learn from what I've been given in life.

My favourite quote is "comparison is the thief of joy". Keep the things that you have got and the things that can do close to your heart.

dalek

I love that quote, thank you xx


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Wobbly

Hi dragonfly
I'm 47 nearly 48 so no spring chicken have had the symptoms since I was abt 40. It's just not what i planned life would be like i imagined running around with the grandkids and still having them all round while i cooked for them.
I thought and expected to work full time until i retired. When we moved a few years ago i had to sign to say i would work till age 67 to pay off the mortgage. We have already decided that we will sell up as soon as the renovations are complete and hopefully be motgage free after that.
I have now gone part time which is allowing me to rest and recover between shifts. My boss is really good with me and allows me to do alot of office based work and adapts as my working time goes on. He doesn't say anything when i rock up with several medical appts in one week this all goes to make me feel better abt my job and myself.
I think i am adapting to this way of life and think i am doing well and then another part of me breaks or gets worse or i have to start and think about using another aid.
Right now the aid I'm planning on is a mobility scooter - dont know if you're allowed to make recommendations but they would be greatly appreciated if you are. It needs to be portable so hubby can get it in and out of the car. This aid has been a long time in the thought process i feel like i am giving in but what choice do i have i can hardly walk and miss out on so much as i can't keep up or walk any distance.
I think of arthritis as getting in the way of my life still and i fight it i really need to get to the point where arthritis is part of my life and i accept that and dont fight it so i suppose getting the scooter is quite a big step and it will show me how much better it will make my life.

Many thanks for all your replies

Wobbly xx

Rach101

You're so right SW I should stop trying to understand it! It drives me mad trying to work out what's going on with my body and I just need to let it go I think.

My experience of M.E, was very different to my experience of inflammatory arthritis and didn't include any pain at all. I also had 11 years of really good health after I recovered and I became the fittest and healthiest I've ever been so I'm confident the two are unrelated.

I need to think about acceptance some more, I think it's the key to finding some happiness and peace of mind.

stickywicket wrote:

Rach, don't try to understand what caused it. Rheumatologists don't know so how can we? Many (though not all) people with inflammatory arthritis have a genetic 'trigger'. No-one knows what it is or how it can be activated. Many who do have the trigger don't get arthritis. It's a lottery.

Just a very medically-uneducated thought - might your 'M.E.' have actually been the start of the arthritis? I know little about it other than fatigue and joint pain which both sound familiar to me.

Inflammatory forms of arthritis can be very hard to diagnose.

Rach101

Hi Wobbly, it sounds like you're doing really well to adapt and manage your new way of life, it is so hard to accept that our lives have changed beyond recognition but I think you're taking all the steps you can to do so xx

daffy2

I think sometimes you have to let acceptance find you rather than the other way round. I'm not sure it lends it self to being actively found, which doesn't sit well with our target-driven, goal-orientated modern way of doing things. The important thing as far as I'm concerned is to differentiate between acceptance(which is positive in allowing progress) and resignation(which is negative in tending to favour inaction). That's something I struggle with on occasion, possibly linked to a very long history of severe depressive episodes, not helped by living alone, with family at considerable distance.

stickywicket

Oh what a brilliant thought! Classic daffy

I'm still thinking it through. I tend to agree that acceptance has to find us rather than vice versa but I'd add that we do need to keep the door off the latch and make it welcome rather than barricading ourselves into the past.

I love the distinction, too, between acceptance and resignation.

Thanks, daffy.

daffy2

I tend to agree that acceptance has to find us rather than vice versa but I'd add that we do need to keep the door off the latch and make it welcome rather than barricading ourselves into the past.

And that I suspect is the stumbling block for so many in this process? Putting up the barricades, in the form of denial and/or resentment, is a reflexive response, and it takes considerable mental effort to dismantle them. That's the great benefit of a forum such as this which can gently offer different ways of looking at difficult situations, and the support to try some of the doors waiting to be opened.

Slosh

I agree with you Daffy2. I spent a long time in denial but it took some counselling to help me see and acknowledge it. Even now I sometimes slip back.

stickywicket

But look how far you've come, Slosh. Even setiing up a new business and making a go of it.

Slosh

Thank you Sticky, I really feel that I have, even to having tried to continue my career, giving it my best and now feeling ready to start the process of applying for ill health early retirement. That's also acceptance, knowing your limits and when to listen to your body and step down. One day back at work and it was too much. At least I have something else to focus on.

mellman01

I thought it came when I was retired on grounds of ill health due to osteoarthritis and associated chronic neuropathic pain but I was wrong, however going through 4 years of hell with my last employer, 5 year of argument with the local councils blue badge department desperately trying to get a badge (and failing) paled into insignificance when 2016 came rolling around, that's when I fully understood how ill I been and was and how, whatever happened my life was going to significantly change regardless.

I was diagnosed with a very rare form of stomach cancer in late June, I underwent surgery in August and had half my stomach, most of my large intestine part of my pancreas along with a 11lb (5kg) GIST tumour, lets just say it was a rapid learning curve, ironically the arthritis and all the negativity that came with it toughened me so acceptance of my new life actually was fairly easy, it also showed me I had been a lot tougher than most thought including me, the other thing cancer has taught me is don't look back, focus on the now and the future, none of us know how long we have so don't dwell on any of it, accept it's all part of life and keep moving into the future each new dawn is a blessing so don't waste it moping and feeling glum for whats in the past.

palo

mellman01 wrote:

I thought it came when I was retired on grounds of ill health due to osteoarthritis and associated chronic neuropathic pain but I was wrong, however going through 4 years of hell with my last employer, 5 year of argument with the local councils blue badge department desperately trying to get a badge (and failing) paled into insignificance when 2016 came rolling around, that's when I fully understood how ill I been and was and how, whatever happened my life was going to significantly change regardless.

I was diagnosed with a very rare form of stomach cancer in late June, I underwent surgery in August and had half my stomach, most of my large intestine part of my pancreas along with a 11lb (5kg) GIST tumour, lets just say it was a rapid learning curve, ironically the arthritis and all the negativity that came with it toughened me so acceptance of my new life actually was fairly easy, it also showed me I had been a lot tougher than most thought including me, the other thing cancer has taught me is don't look back, focus on the now and the future, none of us know how long we have so don't dwell on any of it, accept it's all part of life and keep moving into the future each new dawn is a blessing so don't waste it moping and feeling glum for whats in the past.

I wholeheartedly agree, when you have faced your mortality and come out the other side, you do feel a kind of fearlessness, although many more things are now scary too. I live with a condition that can cause me to stop breathing, the best we can do is carry on and treasure each moment, we all die, so we can only enjoy what we have today. Acceptance will help you enjoy each moment...