"Its Never Too Late To Be Who You Might Have Been"

Category: Chronic Illness

Chronic Illness Acceptance -Mastering Being Sick

A man is lying n bad with an eye mask wrapped around his head and smiling. The text over the image reads, mastering being long term sick

It’s been a long time since I have written anything for my blog. It’s all a bit of a mess over here and in need of a refresh! I really would like to be writing here again. To do that, I need first to write an update, to bring you up to speed on where I’m at in terms of my chronic illness. Where I am at is an interesting place. I’ve reached a level of acceptance with my health, where although there is still a sense of loss, there is also a much greater sense of peace. Although it seems like strange terminology to use, I feel like I am finally mastering how to be sick!

Why I Began Using a Mobility Scooter and How It Helps with ME/CFS

I am known for my incredibly open and honest sharing, on all sorts of stigma-related topics. I have many identities, which messages from society tell me I should be ashamed about. I’m transgender, I’m gay, I have mental health challenges, and I am an alcoholic and addict in recovery. My way of overcoming shame has been to share my story proudly. Why then, have I been struggling with shame and embarrassment about using a mobility scooter, and not talking about it?

Receiving a Diagnosis of ME/CFS

After almost four years of struggling with debilitating fatigue and distressing physical symptoms, it has been a relief to have a GP thoroughly investigate my health. It should also be a relief to have all his investigations come back negative. However, it doesn’t feel like a relief. This is because the only option left that explains my fatigue and physical symptoms is a diagnosis of ME/CFS.

Making Sense of Chronic Fatigue | Finding Answers

I am very much behind with my content, especially here on my blog. I have been updating about my progress with my chronic fatigue (or Fred, as I affectionately call it!) over on my YouTube channel. Today though, I thought I might do a summary blog post of all that has happened since I last updated.

ME/CFS and A Virtual Walking Challenge

A couple of years ago, whilst living in Dawlish in Devon, I decided I wanted to walk the South West Coast Path. My plan was to do it in sections, over the course of a year.  Unfortunately, life had other plans for me. My mum became ill, and I had to leave Devon to support her.

Unexplained Chronic Fatigue | Searching For Answers

A koala asleep in a tree

I have learned to live with many challenging health issues over the last decade. Through my addiction recovery, my gender transition, and managing complex mental health challenges, I have become an expert at self-care. I have a rock-solid wellness plan. I have a well-practiced flexible routine that allows me to keep my self-care at the center, and still live a successful life around it. However, when it comes to the crippling chronic fatigue I am currently experiencing, I am stumped as to what to do for the best.

Hypothyroidism – Early Management

Hypothyroidism and early management pf chronic fatigue

I am now six months into my treatment for Hypothyroidism, but my tiredness levels are still fluctuating. Despite my most recent blood test showing my TSH levels as normal, I am yet again experiencing chronic fatigue. Why is this happening if my levels are normal?

Learning To Manage Hypothyroidism Fatigue

Resisting The Urge To Quit

This weeks self-care theme has largely been about resisting the urge to quit. I am still exhausted due to the ongoing hypothyroidism fatigue. This is making it practically impossible to do anything.

The shortage of NHS General Practitioners – How this compromises the health of those who have complex medical histories.

stethoscope-scrubs_925x

Having a complicated medical history makes a visit to the doctor incredibly tricky. The constant explaining is exhausting, and it gets in the way of addressing the actual problem itself. This is a dangerous state of affairs which puts people at risk. The answer to this is to have a regular General Practitioner who you see every time and who knows your medical history well.

However, becoming registered and managing to book an appointment with a regular GP, appears to be so much harder than it once was. I remember growing up with a family GP, who both of my parents saw and then who I saw in turn. I wonder, does this even happen anymore? Recently, on moving to Eastbourne, I have registered with a new medical surgery. Since doing so, I have been having so many issues with booking an appointment and in managing to see the same GP. After posting about my frustrations on my twitter account, it seems I am not alone. Understaffing at surgeries, lack of available GP’s and the inability to see the same GP consistently, seem to be common issues.

I dread seeing a GP. Being transgender, I’m often faced with the problem of the “Trans broken arm syndrome”. This is where whatever symptom you present with, the doctor somehow magically links it to your being trans. I have lost count of how many times I have sat in a GP’s office, with a complaint which has nothing to do with my gender transition, and they then spend the entirety of my allotted ten-minute appointment time asking questions about why I am taking testosterone. They sit there, glued to their screen, brow furrowed, clearly not hearing a word I am saying. I then must explain I was assigned female at birth, I am transgender, I have undergone gender transition, blah blah blah. You would think that being medical professionals, they would be exempt from problematic responses but no. I have had more than a handful of GP’s make comments such as, “You really can’t tell,” or, “Which way are you going?” and most recently, “Oh, so originally you were a female”. By the time this humiliating exchange is over, so is my appointment. I either don’t get an accurate diagnosis, or I am so demoralised I just can’t sit there any longer.

Additionally, my mental health issues mean that I require regular monitoring by a GP. I am currently in the middle of a severe flare-up of depression and anxiety, this means I often need medication reviews and fit notes for claiming benefits. My mental health history is complicated and every time I see a new doctor, I must explain all of this first. Inevitably, this gets tangled up with my gender transition medical history. I again then find myself using up my ten minutes explaining my past, rather than my current presenting issue. While both of these factors can, of course, impact my mental and physical health, a GP who doesn’t know me is often too quick to just assign my presenting issue to one of them, without looking deeper into the matter. These reasons are why it is so essential for me to be able to see the same doctor every time, I can then get all of this over with the first time I see a new GP. From then on, appointments can be kept to the point of why I am there, and I can feel like a patient rather than a medical fascination.

I was lucky in Devon that my local GP surgery wasn’t too busy. I could get an appointment fairly quickly and could see the same GP each time. This means that I managed to avoid the above issues and had great support from my regular GP. This has not been the same for my medical surgery in Eastbourne. I rarely manage to see the GP I am assigned, seeing random doctors each time I visit. This means I am once again facing these common problems, and it has been very stressful and frustrating. For the last six months, I have been severely mentally and physically unwell. I know my mental health challenges inside out, I knew that the way my moods have been presenting is unlike any mental health flare up I have had before. I have said this every time I have visited a GP. However, I do not feel any of the GP’s I saw actually heard me. Instead, they focused on my gender transition or attributed my symptoms to my mental health issues. My anti-depressants have been increased at most visits, despite my stressing that the increases haven’t helped and that I feel that something else is going on.

A couple of months ago, on discussing a strange symptom of numbness and pins and needles in my hand, I had a breakthrough with one of the GP’s I saw. He diagnosed carpal tunnel syndrome and explained that it could be a symptom of an underlying cause. He referred me to another GP at the surgery for treatment and for blood tests. This felt like fantastic progress. However, the specialist GP I was booked to see went off sick. The receptionist rang me to cancel the appointment and to tell me that there was nobody else who could do it. My name would be put on a list, and I would be contacted. Unfortunately, this is when issues at my medical surgery became even worse. The problems then escalated from not being able to see the same GP, to not being able to see a GP at all.

Due to severe staff sickness issues, all bookings ahead of time were cancelled. Instead, to see a doctor, you are asked to telephone in the morning at 8am or in the afternoon at 2pm, to be seen that day. This is not as easy as it sounds. In fact, it is remarkably like the yearly race to the post to get Glastonbury Festival tickets. You constantly hit refresh and by the time you get through all the tickets have gone. I’ve even tried using two phones. I’ve spent many a morning sitting with my mobile in one hand and my landline in the other. Both speakers echoing the words, “Sorry, all our receptionists are busy, please hold, and we will answer as soon as we can.” This is frustrating for anyone of course, but when you are a person who relies on regular GP interaction to stay well, it is an absolute nightmare.

Over the last two months since then, I have had to fight to see a GP, to have the blood request initiated and to then have the blood test itself. Having had the test, now there was the unnecessarily complicated procedure of obtaining the results. I became so frustrated with the constant failure to get an appointment that I gave up. I am so exhausted and low all the time, waking up at 7.30 and hitting redial until finally my call is answered forty minutes later to be told, “Sorry all appointments are gone,” was just making me feel worse. I decided that things must be okay with the results. If there were anything which needed to be addressed surely, I would get a call, or my notes would say something to alert a receptionist when I called?

On a more recent and desperate visit to the medical surgery, I asked the receptionist if it was instead possible to print out my blood test results. The receptionist looked at her computer notes and said, “You need to see a doctor”. I tell you it was all I could do not to fall on the floor in a fit of hysteria! Gathering myself together I felt relief, on the request from an actual GP to see me, I expected this would by-pass the staffing issues, and I’d be prioritised for an appointment. Shockingly no, the receptionist apologised and said I needed to just keep trying at 8am and 2pm.

Finally, after a couple more weeks of trying, I managed to see a GP last Friday. It was another one I hadn’t seen before. Luckily, I did not find myself having to explain my entire medical history, likely because my medical issue was at last clear. The GP informed me that I have hypothyroidism, an underactive thyroid. Alongside this, I also have low vitamin D and high cholesterol which are apparently side effects of Hypothyroidism. An underactive thyroid causes a myriad of symptoms, two of which are extreme fatigue and depression. This could very well explain why my low mood has been so unstable for the last six months and why I’ve felt so utterly exhausted.

This is the reason why it is vital that those of us with complex medical issues assert ourselves. It is all too easy in a ten-minute snapshot, especially with an unfamiliar GP whose focus is on our past rather than the present, to miss a critical health concern. I am aware that the NHS is under a ton of strain and there is a general lack of NHS GP’s.  However, there must be a solution to this in the meantime. GP’s do most certainly need more training in healthcare for transgender individuals. I also think this is the same for patients who have mental health diagnosis, as the same problem exists of seeing the condition rather than the patient. It may also help to develop new guidelines for people with conditions that require constant monitoring, to be prioritised and to have an allocated doctor so that there is consistency in diagnosis and treatment. In the meantime, those of us with unusual or complex medical histories, need to be persistent with our GP surgeries. We must make sure we strongly advocate for ourselves to be seen and heard so that we can get the treatment we need to stay well.

Powered by WordPress & Theme by Anders Norén