Most of the time over the now 25 years of RA being a presence in my life, I have managed to ignore it. I've lived a good life, I have escaped with only minor joint damage. Really, I have little to complain about considering the diagnosis that my bloods indicate a severe sero-positive disease.
I try to stay positive, look on the bright side, to thank my lucky stars and count my blessings. Sometimes though, it all gets a bit much. We know the battle is never won, we know that our lives might be shortened, though what that means in reality, who knows.
Of course the whole Covid thing hasn't helped us and Omicron, which may end the Pandemic and leave us with an endemic virus, we just live with. It has worn us down though, we have been labelled, well many of us have, as Clinically Extremely Vulnerable, we have been isolated, told to be very cautious and limit our social interactions. .. Hard labels to bear when you are constantly already living with other labels. With a disease like RA, and many others, I know, our lives are already altered, our social interactions limited sometimes.
For a person who refuses to allow depression a presence, I have been at a low ebb for the past few weeks. Re-evaluating my life, my choices and wondering if I should make changes. I guess that might be a natural thing to do at almost 65, if I am to move house for example, it should be soon because it could be much more difficult in 5 or 10 years, to do.
Some days I would welcome an end. No, I don't want to end my life, but would I mind much if it happened... some days, not often, but on occasions.
I have a great network of friends and family, even though I live with just my dog. Honestly, mostly I am happy... I have many hobbies and interests to keep me occupied.
The point of all this? Just that it is ok to admit to struggling sometimes, that it is ok to not be ok and being honest with yourself... while taking the greatest of care of yourself, is so important.
Go gently through the days and nights. Spring is on its way
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Brushwork
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OMG Brushwork, you have articulated exactly how I feel but was unable/afraid to express it even to myself. With Covid, my Mum deteriorating so quickly and ending up in a nursing home and me turning 60 it feels like time is running out. I'm normally quite positive but anything but at the moment! Thank you for pointing out it's OK to have these times...
I find that the most frustrating thing is that it has become so difficult to be someone who contributes to ‘the community’. - RA, CEV. COVID , unpredictable joints etc. ( not to mention my age mid 70’s)Perhaps its really that Im in age denial!
Hope you feel better as the days get longer - daffodils will be out in a few weeks 🌷🌼
How true, my community art classes had to stop and haven’t returned, I really enjoyed teaching/coaching people. I met some lovely people through that. New leaf though, volunteering for CAB instead starting in a few weeks, hopefully.
Hope springs eternal and we are surrounded by beauty… always something to lift the spirit.
Brush work, what an insightful piece of writing. Thankyou.You sum up beautifully how I, and I suspect many of us feel living with RA.
I'm not depressed, never have been, but as my health diminishes due to RA and my world is becoming much smaller, I do sometimes wonder what it is all about.
I've got great support from my family, but I cannot see them as often as I used too, my health doesn't permit me to travel. I'm increasingly on my own, I'm not lonely but alone.
My friendship circle is rapidly disappearing as I cannot walk, swim and go for the wee beer afterwards with them that my life entailed pre RA. I actually find it quite sad meeting up with them and inevitably the stories arise about the latest walk, day trip away or whatever.
The friends I do see, I feel that I have little to say, I spend my life at home, reading, and listening to online talks.
My fabulous partner visits me very regularly, but increasingly I feel a burden on him.
Not a great life for either of us, who had looked forward to a life of travelling and outdoor pursuits when we retired.
Thankyou again for posting, you dare say something like this is a medical environment and the prescription pad is whipped out and anti depressants prescribed.
I'm not depressed, I'm sad at times over the loss of me as an individua, and the life in retirement that I was looking forward too.
Yep your words and Brushworks is how I feel at the moment I don’t see myself as depressed maybe some anxiety which never would have been a me thing. But this disease and watching life go by and not much input does make me question so much at the moment x
Sadness and a milder degree of anxiety are suggestive of being in touch with reality. Who would not be a little anxious faced with the eminent health issues you and I are facing ? Yet as said dare mention any of these feelings in a medical environment and you are immediately given a label of being depressed, anxious or both and the prescription pad whipped out. Remember GPs and rheumatologists have little training in psychological and psychiatric conditions. Many have not studied these conditions since medical school, decades ago.
My previous GP and consultant habitually, continuously tried to give me antidepressants quoting around 1/3 people with RA experinece depression. They could not seem to compute that 2/3 therefore don't and a degree of sadness can be therapeutic in working through difficult situations.
I love this forum for the ability to discuss how we are feeling without feeling we are somehow not coping.
My GP discussed anti depressants and I refused I said I feel sad which is whole different experience. Sad for the losses of loved ones, loss of work and loss of a life I thought I would be having with my hubby and work and in play and the disease over riding everything. I think that your reply sums up my experiences too. I cant move on yet, as too much going on with the body that it keeps driving me back down the worm holes of sadness when normally a pro active person.
I look at hubby who is depressed and we are very different in sadness vs depression.
I do believe sharing thoughts and feelings about our situation is important. It’s not always about about a medical issue, coping and all that entails is equally worthy of time and voice.
Morning. I think we all get low. I also think it’s good we can post on here to say so. To make myself feel better this year I am going away every month from March to September (not August). Sometimes just for a few days, sometimes for longer. It has given me things to look forward to. I have always used holidays in this way, but have been housebound really for the past two years. [Scotland, Wales, Isle of Man have stricter policies than England, so I’ll feel safer there].
Re: moving house. The prices have gone insane, but if you are ‘downsizing’ I suppose that will be to your benefit. As you are 65, I would maybe research what areas/ types of houses you want and make the move to mark becoming a pensioner. Rightmove lists all the houses irrespective of estate agents. Have ‘house surfing’ as your new hobby. Nothing like a good daydream. Xx
Yes,Yes,Yes…plan your move now,.I told everyone to do that…never dreaming I would want/need to move myself.Well fractured vertebrae fixed that little day dream…& finding a home without stairs became essential.
But ignorance is bliss so I put my house on the market.
I knew moving at 80: was always going to be a challenge… but with Covid & Solicitors working from home, then losing my first buyer three days before I was due to move …..is something I would not wish on my worst enemy!
But apart from …5 months post move…..,,still having boxes to unpack …I’ve made it…..but I swear it has aged me ten years!!
So off you go on a house hunt…..that’s the fun bit…nosing around other people’s houses…after that it gets very tedious as buyers can never make up their minds without three weeks to think about things.
I wish my Mum had moved earlier trying to do it now has caused so many issues plus her health so keeps being shelved. I have said you have good neighbours I think staying put is now on cards.
Yes that is a good plan…make her comfortable where she is…..but my lovely neighbours had just moved…so I chose to go too.It will be OK once everything is unpacked….I hope!
Again similar here Dee, my mum refused to move nearer her family 6 years ago when my step father died, despite long discussions about the inability of her family to undertake regular long journeys to visit her. Her and my health have now deteriorated beyond an occasional visit. I have daily calls, often more than 45 minutes with her, where she complains continually how lonely she is. The calls are , let's just say it straight, a burden on me. She has a social life, goes out locally, even during Covid and has a much better quality of life than I do. But sees her friends families pop in and out and wants that of us, despite the 4 - 9 hr journeys we have to see her, depending on where we live.
My advice move nearer your family when you are able to do so. You can build new friendships and activities if you move in a timely manner, and be near your family.
Yep snap on this too! They would not listen 5years ago said too young to think about it at 75 and been downhill and yes wants me to drive and do the shopping and its finishing me off. She almost snarled at me last week when I said I had reset the Sainsbury delivery up! Why cant you just take me to the shops...................Love her but blimey x
My mum will not permit me to set up a food delivery, she cancelled the morning check call I set up for her, with her agreement from the sheltered housing providers she lives in. She has the emergency pull cords in her flat tied up and hidden behind furniture, employed a handy man to remove hand rails in her shower room, and calls me everyday about her loneliness and increasing inability to do her shopping.She often relies on others in the sheltered housing complex to bring her milk, bread and other essentials.
I've tried reasoning, I've rang the sheltered housing complex and spoken with her GP. Noone can do anything without her permission. She is becoming increasingly muddled, but everything I have mentioned are long standing personality traits too, nothing new.
I've just had to try and put things to the back of my mind, but do know the crisis point for her is just around the corner and I simply won't be able to do much.
Think about it on your 80th Birthday….& see if you’d do it then.😩
I honestly didn’t feel “Old”…..Yes….tired & fed up that I couldn’t do as much as I would like to do….but on the evening of moving day…I honestly wondered how I was ever going to cope ..& the answer is….you have the choice…either you knuckle down & slog on…or you don’t.
I am still not living as I would wish……but I have accepted that if I go quietly & calmlyI will get there…but there is no time limit!
Omicron seems to have been the straw that broke the camel’s back for me
Just before Christmas it was discovered that I am severely anaemic and have been for quite a while which puzzles me that not picked up in my regular blood tests
I have now been referred to another consultant for investigation- this is the 4th department of our local hospital that I am under
I think all this and the emergence of omicron tipped me over the edge
Everyone tells me how incredibly strong I am but I turned to my husband and said ‘I am done with being strong’ and really broke down emotionally
But with his and my family’s support I am gradually feeling more like me and ready to take on another battle
I am so lucky I am not alone but truly no one can understand what we go through and I for one would be at a loss without this forum
Thank you again for sharing your feelings and take care of yourself
It is difficult at times to keep going and keep strong. When waiting for the paramedics to arrive on new years eve, through my tears I said similar to my partner 'I don't think I can go on with this anymore' , then since things have settled a good bit and I have an emergency appointment with the rheumatologist on Friday I'm bouncing back.
This forum is so good for being able to share our thoughts and feelings.
Thank you for writing this, I understand all of it. The struggle trying to keep a social life going. Today a small group I take a short walk with once a week decided on a different venue instead for a coffee, so I am thinking parking, are the seats high enough, any steps, the virus etc. Social life and mobility has diminished over the many years with RA, fatigue etc. and lots of time spent alone, and all you say I 'get'. Thank you for putting it into words and to know others understand.
Looking forward with you to the bulbs flowering and warmer days and lighter nights.
Brushwork, thank you so much for sharing your thoughts. Although only a few years in with RD myself, I recognise many of the feelings you express. I think this is always a difficult time of year generally anyway, even for those living without a chronic health condition, as a New Year inevitably brings a process of reflection, and looking ahead to what the next year may bring. This is where things become difficult for me, if I can manage to live in the moment I can get through each day and make the best of the day without allowing negative thoughts to dwell. But looking forward is difficult, it makes me scared about how much more I am going to deteriorate, how much more I am going to lose.
I agree with you that the pandemic has had an effect on everyone, and the problem is that we are already weary from fighting the battles that RD throws our way. I shed a tear today over a jokey comment that my 9 year old son made about how slow I walked. He didn’t mean to hurt my feelings and I made sure not to cry in front of him, as I knew I was being over-sensitive. As you say sometimes it is ok to admit we are not doing ok, and thank you for helping me realise it. Big hugs to you and all the other lovely people in this group 🤗
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