Langsung ke konten utama

My 7 year ME/CFS diagnosis anniversary

1st March. My MEversary. Diagnosis anniversaries are tough, and I can't properly explain it.. They make you reflect on life and where you're at, and the years with chronic illness that have passed. I was diagnosed with Chronic Fatigue Syndrome in 2010, 7 years ago. I'd been ill for 6 months. I was 17 at the time. I've now been ill for 3/10ths of my life.😳 How the hell has that happened?! I thought I'd be better in a matter of weeks. 390 weeks (and counting) isn't quite what I was thinking..


The last 7.5 years have been beyond difficult, but they haven't been all bad. I've had some great times, with some fabulous people. Chronic illness hasn't wrecked everything. But it has wrecked a hell of a lot.


Chronic illness has scuppered a lot of my life plans. Uni didn't go to plan, and became out of of the question when things escalated. I'm currently not massively functional and am very held back by my health. I've been exhausted and in pain for 7.5 years. I currently have carers coming into me and am having alarms set up. My life is not how I would have ever imagined.


I hate that I got so ill while I was so young, and I hate that it's been so many years and I barely remember being well, and it's not always easy to know whether it's good to remind myself of all the years ahead of me. I hate the possibility of so many years ahead of me suffering with ill health (physical and mental), but I'm still young and there are so many possibilities and different ways I can choose to shape my life. Mostly I choose to live 'in the present moment', trying to distract myself from the past to be honest, but sometimes it's good to look to the future, and try to convince myself that it can be enjoyable and positive.


There are good things about my life, but it's also challenging and hard and painful and dull and lonely at times.. My health problems eventually took their toll on my mental health, and my mental health difficulties, and treatment for them, is a real struggle, particularly alongside demanding physical rehabilitation.


7.5 years is a really long time. But things have changed and varied a lot during that time, giving me hope that things won't be this way forever. There will be challenging times ahead, I'm sure of that, but I'm currently making some progress and working hard with various professionals, so I hope with time things will seem easier. In the last year I've learned to stand again, and learned to walk again. I can now do some things more easily. I'm no longer afraid to move my legs for fear of triggering seizures. I'm a bit more relaxed in bed at night. I've come a long way in a number of ways, and there is reason to believe that my progress can continue.. I daren't believe I can make a total recovery, but (some..) things are moving in the right direction, and I can only hope that that continues..


Hopefully another year down the line I can write a post reflecting on the amount of progress I have continued to make. My ME/CFS is no longer the condition that is disabling me most, but it continues to be a struggle, and it's where it all began, 7.5 years ago.



Komentar

Postingan populer dari blog ini

FND Awareness Day 2017

Functional Neurological Disorder is a condition where your brain and body lose the ability to communicate. It's like having crossed wires. Your brain is talking in English, but your body only understands French, causing a lot of miscommunication. It's a complicated condition, and can be scary to suffer from, and frightening to watch someone battle. People with FND can suffer from many, many different symptoms. These include: Weakness, Paralysis, Seizures (non-epileptic), Bladder and Bowel dysfunction, Co-ordination or Dexterity difficulties, Speech problems, Chronic Pain, Cognitive changes, Gait & Balance problems, Headaches & Migraines, Involuntary Movements, Sensory changes, Sleep disturbances and Visual changes. Basically anything that involves the nervous system can go wrong in FND. FND is still fairly poorly understood, and patients don't always receive the medical help and support that they need and deserve. It can be a battle to access all the service...

NHS: Junior doctors strike

This is a bit of an essay, but I just want to have my say. I'm in the UK and we are lucky enough to have a National Health Service. The NHS means a lot to me as a patient. I have a lot of chronic conditions- the NHS has done a lot for me over the years, and if the government runs the NHS into the ground (which seems to be its intention), an insurance company wouldn't want to take me on. It'd be an inconvenience for many healthy people, but an absolute disaster for the thousands of people like me. I am totally in support of the junior doctors strike. The team of junior doctors were incredible while I was in hospital. Some of them were always there each day when we were woken up, and still there when we were settling down into bed each night, including over weekends. The team of junior doctors took all the bloods, were on all the ward rounds, discussed diagnoses with family members, supervised students, made life-saving decisions, re-assessed patients whenever a new symptom e...

Patient Abuse- speaking out, one year on..

I haven't known how to write this blog post, but I knew the time would come when it felt right, and I've decided that time is probably now.. I don't want pity, I just want to take control back. I want to express what happened to me on my own terms, because it's nothing to be ashamed of or embarrassed about (despite how it might feel) - after all, it was not me who did anything wrong!!! It's 1 whole year since I was assaulted by a nurse. I'm not going to skirt around it at this point, I'm just going to say it as it is. I was treated abusively by someone who I should have been able to trust. It all happened 365 days ago when I attended hospital for a routine neurology appointment. My appointment had been difficult for various reasons and I was massively struggling with the hospital due to post-traumatic stress resulting from some distressing experiences during my inpatient stay. It all became overwhelming shortly after my appointment and I collapsed in the wai...