I am laughing at my own title because I’ve made juggling health problems sound like something you can do after reading one blog post. It isn’t easy of course, but over the years I’ve learned a thing or two and I wouldn’t mind sharing some of it with you today.
Life can be a right bugger. As if being predisposed to mental health issues wasn’t enough, my body is also wracked with physical complaints. I was diagnosed with a rare blood disorder called Neutropenia in 1998 and then M.E nearly 2 years ago. Neutropenia is a condition where the numbers of bacteria fighting white blood cells (neutrophils) are very low. This means I am prone to constant infections and I’m unable to fight them off. I have to take injections which boost my neutrophils, otherwise I could end up seriously ill, or dead. The injections have terrible side effects and make me very ill too, but I have no choice other than to take them. The M.E invloves crippling fatigue, aches, pains and ‘brain fog’, where I am unable to think clearly. Lovely. Both are lifelong conditions. I’ve often wondered how far they are all interlinked. The neutropenia was deemed to be idiopathic (without known cause) while the M.E was apparently as a result of contracting swine flu.
I’m sure there are environmental and physiological factors at play which determined my susceptibility to these illnesses, but not one single doctor has taken into account the fact that they both appeared after the two major mental health crises I had in my life.
Without wanting to be over-dramatic, I did think it would be a miracle if I got out of these episodes alive. Lo and behold, here I am, but it seems my body is still bearing the brunt of the shockwaves. It’s proof, if any was needed that the mind/body connection is real and tangible.
If I am feeling bad, which is a lot of the time, it’s not easy to work out which of the issues is causing the problems. If I am physically unwell, I automatically feel down too. But sometimes when I’m down I think that seems to make me more ill. It’s a bit of a chicken and egg situation which is hard to separate.
Sometimes it causes more trouble that it’s worth to try and pick out which illness is causing the problem. Better to just accept that I feel shit and see what I can do about it.
My approach to the problems I face is to always keep trying to improve my situation by whatever means. I’ve made huge advances in controlling my depression and anxiety because I’ve had them the longest and been able to try so many different approaches. Ultimately, if you make it a priority to live the best life possible under your current circumstances it can be very empowering. In my experience, there is always something you can do to improve how you feel. I’ve struggled a lot with the Neutropenia, as it’s a rare condition and doctors haven’t known the best ways to treat it. I’m still chipping away at controlling it because I don’t think I have the best outcome I could have yet. The M.E has been a real kick in the teeth as it seems to follow it’s own rules and I’m still learning to fathom its mysterious ways. I know that as time goes on, I will be more able to decipher its patterns and behaviour.
The main challenge of living with multiple health problems is that no one doctor will oversee the whole of your care. I see separate consultants and specialists for each condition, so until we develop a more holistic healthcare system, I’ve decided to be my own doctor.
Yes, a doctor has studied at medical school, but I can access much of the same information they can through the library and the miracle of the internet. Yes, doctors wear white coats but that does not mean they are clever. It means they are stupid, because it’s very difficult to get blood and guts out of whites. It would be way more practical to wear maroon or navy.
Only I can know how things feel for me and how my health problems are interlinked. Plus, I’ve got more time than they have to research rare blood disorders and think creatively about how to manage them.
Every single improvement I’ve made in living with Neutropenia was as a result of my own intervention and suggestions and NOT because of anything a doctor did for me. I’m sure they are much better at dealing with more common problems, but if I had followed their instructions I would still be in and out of hospital and seriously ill. I took it upon myself to experiment with the timing of my injections and would you believe it, I did a better job than they did. My neutrophil count is cyclic – which means it goes up and down, usually in a 3 week pattern. I was told to take the injections when I started feeling ill, but that was already too late. The decline of neutrophils, along with increasing infection meant that the injection was similar to shutting the stable door after the horse had bolted. Yes, they might have stopped me dying but I had fuck all quality of life. I decided it would be better to intercept the neutrophil count on the way down, before it went too low and an infection appeared. I approximated that this would be every 2 weeks. I suggested to the doctors that maybe 3 injections over 3 days at this point would massively intercept the process and bring my neutrophils back up. It did. Within 3 months I had stopped getting severe infections and could resume my daily activities. My consultant declared that I now knew more about Neutropenia than he did.
It’s a mistake to think doctors know everything and know what’s best for you. In my experience they don’t, and you should be careful about handing over your power to them.
As I see it, we don’t have a choice about what happens to us in life, but we can choose what we do about it.
My health complaints have buggered up my life in so many ways and caused me so much grief. It was a massive effort to think about trying to change anything for the better when I was flat on my back in bed after being fucked over by my mind and body yet again. But if I didn’t, what would be the alternative? I don’t want to be depressed and ill forever and miss out on life. I know there are some conditions which you can’t do much about. I’m certainly not advising that people alter their medication or treatment without carefully looking into it and considering all the options. It’s the mindset of change and improvement I am promoting.
No matter what cross you have to bear, ask yourself honestly – have I done everything I could to realistically improve my situation? Are there other options besides the ones that are right in front of my face? Of course, there comes a point where you have to accept you have done all you can. I know I can’t eradicate my health problems completely. But I can take responsibility for them and not expect the NHS to come up with all the answers.
In next week’s blog – read all about how I challenged doctors AGAIN and got results!!