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 š«¢
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. Donāt get me wrong, Iāve 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 itās 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 donāt seem to know this. I have had peripheral neuropathy on and off for years. It wasnāt 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 wasnāt possible with rheumatoid arthritis and that it was fibromyalgia. No, itās far more likely that it is tarsal tunnel syndrome. And yet all the doctors and consultants that I have seen havenāt admitted this. And I havenāt 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 wouldnāt 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 wouldnāt. 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 donāt 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 itās not swollen now (it went down the day before the appointment) so thereās 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 couldnāt 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 Iām 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 didnāt 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 donāt 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 Iām stupid. If I just did some nice things I would feel better. Oh, I donāt 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 wouldnāt advise it. And yes, I can enjoy my life. I can paint, draw, sew and do things for myself that donāt involve moving that will make me feel better. But it is only recently that I have been able to read, because until then I couldnāt 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 havenāt got there yet. Donāt blame yourself. It is perhaps that they havenāt 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 itās 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 donāt panic if this happens to you. I often find my hearing is affected. I find I fall over a lot at certain times. Again, Iām told this is nothing to do with this disease, but I donāt 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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Im an awkward one.
A cautionary tale and an out and out āget it off my chestā moan!
