An article I've written... : So, I have combined some... - NRAS

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An article I've written...

Tealblue2 profile image
Tealblue2
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So, I have combined some ramblings of my journey to this point and I would like to share them with you... I feel the need to get this off my chest and share it.... warning it is long šŸ«¢

I have read everything I can about this disease. Most of it several times. To make sure I understand. To remind myself as I forget. Also, so that I can think about it from different angles and make sure I have enough of an understanding. Donā€™t get me wrong, Iā€™ve relied heavily on doctor google. But I have also read every available leaflet that I can get my hands on. I have also joined a social media group for people like me. It is like some secret society that everyone in it knows about and how it works. But getting there is unchartered territory.

But what I have not found is anything about the truth of the journey to getting to remission. Lots of people write about what it is like once they have the disease under control. The bit they recount after diagnosis of their journey there is brief. It always talks about how hard it was, but itā€™s all better now, so not to worry.

And whilst I truly believe that will be the case and the correct, positive way to approach this issue. What is lacking is the details that make what I am and have been going through less scary and isolating. The journey to get to where I am now has been incredibly hard and much longer than it should have been. And I have no signposts that say, oh yes your high blood pressure, palpations and heavy chest is because your nerves are being effected by inflammation. General practise doctors donā€™t seem to know this. I have had peripheral neuropathy on and off for years. It wasnā€™t listened to. It is painful. It effected the way I walked. It made me exhausted and the pain running up and down my legs hurt. And yet even the rheumatology nurse told me that wasnā€™t possible with rheumatoid arthritis and that it was fibromyalgia. No, itā€™s far more likely that it is tarsal tunnel syndrome. And yet all the doctors and consultants that I have seen havenā€™t admitted this. And I havenā€™t been given the pain relief or correct medication to get this under control. I am still fighting that fight.

It was not helped that I was misdiagnosed for years. Or that I have had countless medical professionals laugh at me and discount my concerns. I was told in 2020 that I had long covid. I was sent to a neurologist. I was given a brain and back mri. I had nerve conductions tests in my leg when it wouldnā€™t work, and I developed this lope sided shuffle. It was like my brain was working and telling my leg to move, but the message was getting lost. The brain scan showed white spots. But this was never followed up or explained. I was limping with a stick, frail and exhausted. Told I had long covid and no one knew if I would survive. Many thought I wouldnā€™t. The only good thing that came from this was that I learnt how to pace. I learnt to judge my spoons and how to use them. I learnt to sit every evening and not walk far and how to recover. I learnt to balance my nervous system. I tried everything and anything to get better. It worked, for a short time. But not forever and the things I learnt then donā€™t work as well now. No where near as well, because this disease has progressed so far. Even with medication I struggle to get to that level of health.

The food we eat does affect this disease and yes, a Mediterranean diet is highly recommended and I have seen for myself the difference it can make. But tell me how to achieve that when you hurt, you are exhausted, and you end up eating anything you can get your hands on to give you enough energy to get through the day and survive. It is much easier to live this way when things are in control and you have the energy to buy, prepare and eat the food that you know will help. You know that sugar increase inflammation but without it you have no idea how you are going to make it through the next hour without collapsing.

But before this I had swollen joints. Numerous unexplained bladder infections that took 2 years to get under control. I did an eConsult once (I have no idea when) with a hugely swollen ankle and uploaded photos. I was given a doctors appointment weeks later and despite my pleas to look at the photo, the GP responded with itā€™s not swollen now (it went down the day before the appointment) so thereā€™s clearly nothing wrong with it.

What preceded that was years of stiffness. Sitting in the car on a journey of more than an hour and getting out stiff. Or more accurately in tears because I hurt. I couldnā€™t identify where, but my body hurt. I woke at night with pins and needles in my arms. I got tired easily. I needed more sleep than anyone of my age should ever need.

I ended up in A&E at least twice with breathing difficulties, from suspected covid infections. To be told that I had inflammation of the muscles around my rib cage. To take Naproxen and it would get better. To be fair it did. But no-one made the connection.

I was hospitalised for a week with high blood pressure earlier this year. Something that is back now and is scary. It is painful, I have a lump in my throat and my chest feels heavy, tight and constricted. I feel like I could collapse and yet the doctors in the hospital had no idea ā€“ and Iā€™m talking about the consultant on the acute heart ward I was on ā€“ as to what was causing it. The A&E doctors admitted me for suspected repercussions of Rheumatoid Arthritis ā€“ but the consultants didnā€™t consider that I was demonstrating vascular complications of my illness.

Six years down the line and I am still in pain. I am still limited. I hear stories of how people get in remission and can exercise and barely know they have the illness. And yet I am in pain all the time. I donā€™t have the energy to go for a walk and get the fresh air and time in nature that my mental health so desperately needs. People talk to me like Iā€™m stupid. If I just did some nice things I would feel better. Oh, I donā€™t doubt that. But how can I if I feel like I will collapse? I have tried to push through it and carry on. I learned the very hard way that was not the way forward. That made it worse. A whole heap worse. I wouldnā€™t advise it. And yes, I can enjoy my life. I can paint, draw, sew and do things for myself that donā€™t involve moving that will make me feel better. But it is only recently that I have been able to read, because until then I couldnā€™t process the words on the page, I was so unwell.

So, whilst I pace and do my best to recover and find the balance of what I can and cannot do, depending on the medication I am on. I am still a person, and I want my life back. But it will happen, and I will find it. But please, if you havenā€™t got there yet. Donā€™t blame yourself. It is perhaps that they havenā€™t found what works for you get and you are not being overly dramatic. It is incredibly painful, tiring and lonely.

To date this disease has affected my heart, eyes, ears, lungs, and the joints in my hands, feet, wrists, ankles, knees and elbows. My eyes were hugely blood shot a few months ago, and they were gunky, and I kept losing my eye sight for short times. When I raised this with the nurse, she told me itā€™s just part of what I was going through. Does anyone know how scary that is? I needed more information than that. I got it from the optician and have drops that help the dry eye and the medicine is enough to slow the inflammation in that area. But please donā€™t panic if this happens to you. I often find my hearing is affected. I find I fall over a lot at certain times. Again, Iā€™m told this is nothing to do with this disease, but I donā€™t believe that. I believe my balance is affected when my earing is affected. I have had tinnitus since this all kicked off. That gets worse when I am tired. I have found ways to counteract all these symptoms and deal with them, like listening to podcasts at night if the tinnitus is bad because the noise drowns out the silence that makes tinnitus worse. You will find ways of dealing with this yourself.

Now this is not designed to be a criticism of the NHS. Or the people working in it. No one doubts that the system is on its knees. But the number of GPs who have laughed at me and told me there is nothing wrong is scary. You know your body. Listen to it. Get somebody to hear you. Clarify your thoughts and ask the challenging questions. I managed that in my last phone conversation with the consultant. I challenged where the idea of widespread pain had come from that I was told I had and he admitted that the department had been over treating people for years, but that I had severe and out of control Rheumatoid Arthritis and they needed to get that under control soon. But I had to get myself well enough to be heard instead of crying and to a place where I understood this illness well enough to challenge what I was being told. It has taken me at least 6 years and I suspect probably nearer 10 years to get to that point.

But maybe the point of this is to say this disease is not about a few aching joints. It is about so much more. The advantage we have is that there are so many more medications now that can stop the progression, that have not been available until recently. And I will live my life, enjoy it and live it to the full. But it will not be the way I planned. It will not be the way that other people my age get to live their lives. But I will cherish every second of it. I have been told that I am legally classified as disabled. Because I rely on medication in order to be able to walk, under the Equality Act 2010 I am disabled. I can tell you that takes some getting used to. That takes adjustment. That shakes you to the core. But you will get through this. You will find your way. You will be happy and find the joy in life, because there is so much to be had. And my obsession with sunsets and photographing them is my way of proving that. That and the love I have for my daughter and my determination to be the best mother that I possibly can be.

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Tealblue2
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15 Replies
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AgedCrone profile image
AgedCrone

I think with the best intentions in the world you are making life really difficult for yourself.

For starters ā€¦. reading Dr Google is the very worst thing you could do. A lot that you read on there is old out of date adviceā€¦& puts ideas into your head that cause you to worry needlessly.

Alsoā€¦.do try taking some gentle exerciseā€¦..sitting clutching painful limbs really does not help with rheumatoid arthritis. You need to move gently.

We all find our own way to acceptance ā€¦.sometimes very slowlyā€¦.so note how many people here have managed to get into the magic remissionā€¦.& see if there something they mention that you could try.

I hope you will soon feel you dealing with RA betterā€¦ā€¦but please don,ā€™t rely on Dr Google.

Tealblue2 profile image
Tealblue2ā€¢ in reply toAgedCrone

Oh I do exercise. I just wish I could continue to walk 10,000 steps a day and swim miles like I I used to. I still try to achieve this and this is when I feel ill. I want to be able to achieve this and where the frustration comes in

AgedCrone profile image
AgedCroneā€¢ in reply toTealblue2

If you keep reading here you will see many have struggled like you & have slowly achieved their goal to lead a good life with this rotten disease.

Acceptance is allā€¦ā€¦.stop fighting it - be in control - you will win.

Tealblue2 profile image
Tealblue2ā€¢ in reply toAgedCrone

Absolutely. Hence the whole reason of this piece. Because everywhere else what is written is people have got to that point. And they brief over what it was like to get there. And actually thatā€™s much harder and there is such a lack of information about it that it can make it scary.

Downinil profile image
Downinil

Hi Tealblue2! Reading your post I couldnā€™t help relating to how you must feel when you mentioned people talk to you like youā€™re stupid. Please keep in mind that you are not stupid. Everyone is struggling in life. I think thatā€™s why they seem to belittle of our complaints.

Bethany02 profile image
Bethany02

Believe in yourself being body aware is all that we have sometimes you know you. All that you feel is real and all you know is true for you because it's your body. Drs don't know it all at all. All you can do sometimes is believe in you. Take care of yourself because all you can do is that šŸ’•

Blackberrywine profile image
Blackberrywine

Thank you for your post. Heartfelt, and understood. Just to say I totally get where you're coming from. Beautifully written by the way. Is it an article for somewhere else too?

I too did loads of research. I believe educating oneself is a good thing. Doctors do not know everything and do sometimes make mistakes. It makes good sense to me to be an advocates for ones own health. Since we are all different one size definately does not fit all. It is a devil of a job trying to find what fits personally.

Good luck to you. ā˜ŗļø

Tealblue2 profile image
Tealblue2ā€¢ in reply toBlackberrywine

Thank you. I think it might be, im certainly considering it. Someone said to me the other gpā€™s know a little of everything and nothing of it all. That resonated.

I believe forearmed is forewarn and understanding brings acceptance.

Deeb1764 profile image
Deeb1764

I think Dr Google can be a mix of hell BUT you can also find some brilliant research papers and articles by people within rheumatology fields that helps you understand this complex disease.

I know if I read something i have found on Google then I dig deeper and in fact it helped this week with my consultant as asked about the link of COPD and RA. What I was reading was very blurry so we talked it out and a really interesting chat was had.

šŸ„°

Tealblue2 profile image
Tealblue2ā€¢ in reply toDeeb1764

Thank you. Yes there is a real mix of information out there. But there are good research papers and trustworthy sources

GinnyE profile image
GinnyE

It is like reading the most convoluted, twisty turning, plot driven novel youā€™ve ever picked up, isnā€™t it? You think you can follow it, was that a clue or a red herring? The deeper you get in, the more stuff is thrown up. But, unlike a novel, this is real life, your life. And thereā€™s no clever Author behind the scenes who brings it all together. For some itā€™s a satisfactory journey and ending but for others, not so. If you want to control this heavy tome youā€™re going to take on a lot. For me, I put out fires when I have to.

virtualreality profile image
virtualreality

Thank you for sharing your article Ā Tealblue2 , it certainly sounds like you have a lot to unload. I feel this really captures the perspective of the person experiencing all of those symptoms, questions and uncertainty - and in a way that often, sadly, doesn't feel quite understood by the medical professionals treating this condition in all its permutations. Writing can be so therapeutic, can't it. I hope writing this brought you some release, despite the many frustrations you've been through (and still are). It would be wonderful if you find an outlet for this to be shared more widely.

Tealblue2 profile image
Tealblue2

Thank you. I do suspect itā€™s the result of being alone and not having somewhere to share this but it certainly feels better to have written it. I also wish I had found something more honest in the research I have done

cyberbarn profile image
cyberbarn

Please do not stop reading Dr Google. Although it is preferable to use Google Scholar as that is where the peer reviewed papers can be found.

You said about GPs not knowing things and that can be very true. And that is why they use Dr Google too.

I find it very patronising when medical doctors say don't use Dr Google, because we are just as intelligent as they are. The only difference between them and us is that they were good at memorising things and reproducing them in exams. My first rheumatologist tried to diagnose me with fibromyalgia. When I got the letter I rang his secretary and said I disagreed, I don't meet the criteria. In a patronising tone she asked how I would know that.

I pointed out that as an academic researcher doing a PhD in medical reasoning, I was well aware of what the criteria is, and that he didn't even go through it with me. She looked up the notes and said oh, he didn't check for tender points, did he. I was shocked as tender points are no longer used in the diagnosis of fibro! (he did remove the diagnosis from my records but only after I made a formal complaint. He realised that he had missed things and recommended a second opinion which found psoriatic arthritis).

And that is one of the problems, GPs and other medical doctors can't memorise everything anymore, the amount of information and knowledge is too great and the rate of change and accumulation of new information and knowledge is fast. That is why many, and it is usually the good ones, don't mind patients helping them by reading up and educating themselves on their conditions.

Thank you for what you have written. Have you thought of sharing it with medical professionals? They need to be reminded as to how these diseases affect people.

Tealblue2 profile image
Tealblue2ā€¢ in reply tocyberbarn

Thank you! Thatā€™s very comforting and makes me feel far less stupid than I have been made to feel for a long time.

I am contemplating sharing it yes. Where Iā€™m not sure, because until I use Google I donā€™t have that knowledge šŸ˜‚. But I have approached all the arthritis charities as a starting point.

But I did however send a letter to the gp who laughed at me after I came out of hospital. I went to ask for some help or more pain killers or something so that I wouldnā€™t loose my job. She laughed at me and told me to take some naproxen and go back to work. I subsequently got forced out of a job I love. Maybe itā€™s the teacher in me. But a carefully worded letter about the importance of compassion and the person behind the illness made me feel better.

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