Remission – The Reality

The major elephant in the room – yes I am back. I am back. Let’s see how long it lasts. But, I’m trying to tell myself I can write and I can do this. Big girl pants on.

In a letter received in August, my neurologist told me that I was in remission being in chuffing agony with neuropathy. And yes, I’ve been holding onto this type of article since August last year. I was shocked for two reasons, the first being I’d never heard someone use remission and ME in the same sentence let alone written as a sentence. NHS secretaries are guilty of writing a follow-up letter that shows no sign of rapport built in the appointment; as though you never went there. My neurologist, however, still couldn’t connect my neuropathic attack to my ME or anything in fact, which is a pill I’m struggling to choke on let alone swallow. At the same appointment, this neurologist suggested I think positively and perhaps distract myself room the chronic pain I had been experiencing. A nugget of advice that even I was shocked to hear. I asked him to clarify how he saw me distracting myself and whether he could point me in the direction of a research paper he had written about distraction and chronic pain. I’m often criticised by relatives for my feisty attitude at appointments but I’ve taken to great delight in unpicking where the ignorance comes from. Is it a lack of time? Is it an age thing? Or is it just pure and simple laziness? My advice for anyone reading this with a pending appointment; beyond your GP referral will hold a doctor with a God complex. You do not need to worship them, you are on their level and deserve to be heard. The only difference is the letters before their name. Aside from that, you are even. I often do some investigations prior to informing my conversation, and understand what makes this neurologist tick. Is it a hobby? I often use hobbies to position my pain, for example, ‘I know you’re interested in cycling, but since this relapse, I’ve been unable to attend my favourite spinning class’. It sounds very mad ex-girlfriend, but it works trust me. Every consultant has a private service they run which means their biography on a service provider network is slightly more human than their NHS bio. You can tell which one they’d prefer you read, but what I am saying is, is that this information is readily available if you look, I’m not encouraging you to track their IP address and stand outside their house. Although his remark angered me and I handled his remark reasonably, I had to see it from the side, that he had been the first neurologist to recognise I was in remission with one condition and this condition was nowhere the cause or reason for the present issue. We all know how common it is for a health professional to put every new symptom into the same category as the other symptom holder without any investigations and probing to accurately diagnose.

At the same appointment, I asked him to refrain from using ‘chronic fatigue syndrome’ signposting him to the movements ME charities, government bodies, and NICE had made in challenging stereotypes, representation, and resources around the disease. Progress has been wonderful, but there is a great deal being needed for the NHS to address the management and treatment of people with neurological diseases like ME and Functional Neurological Disorder (FND). In the six years I’ve lived with the condition, my health professionals have always refused to write ME claiming it wasn’t real or not a medical diagnosis, two weeks after this appointment my letter represented not only the conversation but had ME. A milestone for my voice and I; one that few people with ME receive in writing. What was the biggest achievement I wonder? I think it was the combination of seeing remission and ME in one follow-up communication. How would you feel?

What does remission mean?

When I’ve cheered to remission, I’ve often had to share what it actually means. Remission is essentially, no new symptoms are present and you are stable. I am not cured, I still have the same symptoms but they’ve not worsened. I’ve not grown out of my condition like my Nanna seemingly thinks is possible. The same Nanna who has no hip thanks to a faulty joint replacement- that hip is growing back like my condition isn’t one you grow out of. I am very much present with my condition, accepting that in the present and right now I am where I wanted to be two years ago. I’m driving a car again, I am eating wheat again, and I am finally easing back into a stable gym regime that doesn’t trigger a wave of agonising pain.

So Ev, you’re fixed? I’m not fixed, I am coasting which is more than I could do two years ago, let alone a year ago. Pain is still there, I’m not going to say I’m now totally pain-free because I’m not. I’m just finding ways of managing it. I noticed shortly after this biopsy that my pain levels became noticeably more manageable – I was able to do certain things without a major flare but why? I don’t know but I’d love to bloody know. I agree with my neurologist’s theory, I am in remission. The normal test results still frustrate me; how did this neuropathic pain, internal tremor, and weakness come out of nowhere? For the last 12 months, I have begun to journal on my emotions of an evening to try and get into healthy habits working towards looking after my wellbeing. Yet, in no session have I identified a common running theme here and that is a harrowing feeling to sit with – that my health can take a different direction within seconds and I have no control over the changes.

Some of the things that have made some form of a difference:

Disclaimer: I recognise that everyone experiences different results with different therapies and approaches – what works for me and you might be different for another person.

Medication

Since my relapse, my relationship with pain relief has been tricky. I have experienced many side effects and recently have noticed some stability with side effects. I try and take medicines with a drowsy tendency at 9pm to give them at least 12 hours to come out of my system before starting work. I recognise that not everyone has a nice experience with medication = it took me 18 months to find respite. I still wake up mirroring the infamous Kerry Katona interview with This Morning back in 2008, but I live with that alter-ego and accept it’s just me.

Stretching and Sports Massage

I can’t lie – a sports massage completed with a stretching session has made the biggest difference – it has allowed me to honour my newfound flexibility and find relief in the stretches. The saddest thing, the activity wasn’t recommended to me by either health professional so the benefit I notice cannot be replicated by others due to accessibility. We must consider pain as being a whole-body experience – patients seem to be sign-posted to mental health therapies yet physical support seems incredibly poor throughout the country not just in my area. Treatment and managing of pain to me, remains a postcode lottery and is targeted to those with masses amounts of disposable income to pay for it out of their own pocket, you won’t find a sports masseur on the NHS either.

Most recently, I attended an appointment at a pain clinic at St Thomas’ – the person I saw was wonderful. And he didn’t diagnose or prescribe but he listened and heard what I was saying. He empathized with me, that I was being fobbed off and inaccurately investigated by my previous health professionals. He even said, ‘as you have ME I won’t offer you the newly created acceptance behavioral therapy because you’ll have exhausted those avenues’. Br-av-fucking-o. He also shared an opinion that I’ve heard a lot in the last year, ‘You are not the problem, our facilities and lack of testing for these symptoms is the problem. We just haven’t found the right test’. This was new to me and to those also involved in the conversation – never had a health professional shared something so empathetic and compassionate. I felt relieved to know that at least one health professional could see I wasn’t blabbering nonsense.

Let me make a note not to ensure a new post is written sooner. You’ve waited six months to hear from me.

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