In my previous post ‘What is ME/CFS’ I explained to my best knowledge about what ME is and the symptoms and affects it can have on someone’s life. In this post I’m going to be explaining my journey so far and how this illness has and is affecting every aspect of my life.
Not many people know what ME is and those who have heard of it often explain it as ‘the one where you get tired’. The truth is that it’s so much more than just being tired. It has a whole host of other symptoms that accompany it which makes living with it so much harder.
For me I have struggled with other health issues prior to getting ME, including being diagnosed with fibromyalgia in January this year. After continually feeling worse I went to my GP several times complaining of severe fatigue, headaches and just feeing generally unwell. It was then that my GP referred me to the ME/CFS service where I was seen in July this year and was officially diagnosed with ME.
Getting my diagnosis of ME was a relief to finally put a name to what is wrong with me, while at the same time I struggled to take it in and come to terms with the fact I have an incurable chronic illness and I just have to find ways of managing it and to learn to take each day as it comes. Slowly I have gotten used to the fact that this is how my life is going to be now, or at least for the moment being. It’s hard not to think back on the life you used to live before getting ill, it’s almost like you are grieving the life you had before but the only way now is forward and trying your best to stay positive, even though at times it is virtually impossible is really important.
Explaining to friends and family what ME is and how it affects you is hard, a lot of them just don’t understand or want to listen. It’s hard enough dealing with this illness on your own, let alone dealing with those close to you who struggle to even realise what you are going through is hard and extremely real. That’s why I’m extremely lucky to have people around me who understand what I’m going through and care for me and only want what’s best and to help in any way they can. I do have family and friends who don’t understand but I guess unless you have been through it yourself or watched someone you love go through it you are never going to totally understand.
Since being diagnosed with ME I have had to put my education on hold until I am well enough to continue. Stopping my college course devastated me and did prove to me that the reality of stopping and taking time out to rest was probably best. I spend my days at the moment mostly in bed, sleeping or finding small activities to keep me busy. It can be incredibly lonely and isolating some days.
No amount of sleep that I get ever feels refreshing and on my bad days my whole body aches, I feel dizzy and even things like being able to watch TV is hard. I just struggle to focus and concentrate on anything, even reading. My head just feels so fuzzy and I just can’t think straight. Some days even making it a to the bathroom feels like I’ve just ran a marathon. I just feel totally exhausted and wiped out and even after minimal activity I have to spend time resting and recharging because every little thing just takes it out of me. If I do to much afterwards I will just feel horrible, I’m sometimes sick, I have headaches, some days I can’t barely even hold up my own body weight because my body is just completely exhausted. I also struggle a lot with light and noise sensitivity. Some days I just sit in my bedroom with the curtains shut and lights off and just hide under the duvet where it’s quiet and dark. When I’m in a room with as few as 2 or 3 people or even sitting around the dinner table at meal times I struggle to focus on anything and the noise is just so overwhelming that I just cannot cope. My experience with ME is that it’s just so unpredictable and every hour to everyday can be different.
I’ve learnt quite recently that it’s very important to pace myself and even though I find it hard saying no to doing things sometimes you have to. Your health is much more important, seeing friends and family can wait until you are feeling better. Pacing myself is still something I’m learning to do and I often make the wrong decision to do things but like I said I’m still learning and eventually I will get better at knowing when something is going to be to much.
This is only a bit of what living with ME is like. By making yourself more aware of ME and the real and brutal truth about how it can totally flip someone’s world upside down can mean a lot, and that to one of us ME sufferers can mean so much.
Thank you for staying updated, please subscribe and leave me any comments below.