Six Years Sick

I almost didn’t write this blog, I’ve been trying to focus less on my ME and focus more on my life as it stands. However I’ve written a blog for my ‘sick-iversary’ the last few years and I quite like the idea of having a record of where I was at each year to look back on. 

Sometimes it’s hard to believe that I have been ill for 6 whole years, other times it’s hard to remember not being like this. I often feel like my life is getting away from me and I’m powerless to stop it. The person I was before I got sick seems like a completely different person to who I am now, but deep down I still have many of the same hopes and wishes – they just feel further out of reach now. 

 

Last year I wrote about being sick for 5 years, and how many doctors believe that people who have ME that long are unlikely to recover. I can’t say that I’ve improved at all over the last year, and sometimes I do feel like I never will, but I try to hang on to hope. Everything is always in a state of flux and so maybe it will flux in my favour sometime.  

 

It’s been an interesting time lately with the covid pandemic. The lockdowns gave people an insight into what life is like for the housebound - though it wasn’t really a true picture as they were exempt from the fatigue and other debilitating symptoms. I found it quite upsetting the way people were so desperate to return to ‘normal’ and escape a situation that mirrored my life of the last 6 years. 

 

It has also been both frustrating and hope-igniting that long covid has been getting so much attention. To many ME sufferers it feels like long covid is the ‘sexy new disease’ getting all the attention that people with ME have been waiting and fighting for decades to receive. The symptoms for long covid are very similar to ME and many believe they could often be the same condition. Treatments for long covid are in development, and whilst it’s easy to be jealous that they might get a treatment first (wait your turn!), it could also mean new, long-awaited treatments for ME emerge as a result. 

 

I’m still trying different treatments and therapies to see if they help me get better, though I don’t find myself going in to them with the same level of hopefulness I had before. I used to put so much hope into new treatments and therapies, thinking ‘maybe this will be the one!’. There are only so many disappointments you can take before you lose this wide-eyed optimism, but I try to go in with a positive attitude whilst also tempering my expectations. With ME there’s always the challenge of weighing up the energy (and finances!) needed to try a new therapy with any potential benefits. Sometimes it feels like a therapy could be helpful if only it didn’t take so much energy to actually participate. You also have to be wary of bogus medicine and the opportunists preying on the desperate. 

 

I’ve found it hard at times this year watching so many of my friends and classmates getting married and starting families. I find myself longing to be able to have my own family: but I need assistance to look after myself, so looking after a baby could well be impossible for me. I know that childlessness is something that torments many long term ME sufferers, and whilst I’m not out of time yet biologically speaking, I am beginning to head in that direction. It looks unlikely that any of my siblings will be having children either, so I don’t even have nieces and nephews to fill that void.  

 

I haven’t fallen into despair yet though. I try to take each day at a time and not focus too much on the future. I try to keep hope that I might improve or that an effective new treatment might be discovered. Mostly I just try to enjoy the good things I have in my life right now, and remember that no one’s life is as perfect as it may appear from the outside.