Thursday, 21 February 2013


Today I'm posting about the helplessness patients and those around them face.
As a patient, it's difficult to know that sometimes, you're just fighting a loosing battle- you'll still be ill whatever you do, and unlike other illnesses, the harder you fight against CFS, the more ill you get. At times you feel completely helpless. I once asked my consultant what to do when I ended up bed-bound, and he said you have to do the only thing you can do: lie there and rest until you improve enough to do anything else. Most other illnesses there would be something you could do or something you could take to improve the situation, but with CFS it's just a case of waiting and working with the illness instead of constantly fighting against it. I still struggle with this often- it's natural to want to fight against something that is destroying your sense of self, making your life so difficult and limiting what you can do. Constantly testing my limits and pushing boundaries doesn't help the situation though.
I also appreciate that for those around me- my family and my friends- it can be quite difficult to stand by and watch me suffer and struggle. You can't make me better. You can't take my illness away. You can't stop me hurting- physically or emotionally. But you all help every day by standing by me (or more likely sitting by me, lol) and listening and treating me like anyone else and including me and helping me feel 'normal'. Some of you do even more than that- you look after me when I'm really unwell and make sure I've got food and meals and something to drink and my medications- you shouldn't have to do this, but I really do appreciate it, and that really does help massively- I wouldn't be where I am today without the kindness and selflessness of my friends and family. Thank you doesn't really express my gratitude but there aren't any better words I can use.
Alongside this there is also the helplessness of my doctors and other medical people helping me; they were trained to treat and cure people. They can't cure me. Some of them are used to this and accept it, others of them look you in the eye and you can see that they desperately wish they could do something to make me better, to take away my symptoms. They wish they could give me the answers that I long for. I still desperately want all these things, but it's not their fault, and I try not to expect too much from them, but it's difficult. The first time a doctor looks at you with that look of genuine hopelessness is difficult and it doesn't seem to get any easier. I don't blame my doctors and I hope they never feel guilty that they can't make me better- they help so much by just being there through it all and helping me in any way they can. I hate not being an easy patient, and I hate that I can't currently be miraculously cured, but I'm also incredibly grateful to both the medical people working with me and those researching my condition and hope that the wait for answers isn't too long, or my body will heal itself anyway.
A debilitating chronic illness doesn't just affect the sufferer, it affects everyone around them. It can make friendships stronger, but it can also make them more difficult, more one-sided and more demanding. I thank all those of you who have helped me through the last 3 and a half years and hope the coming years will bring the light at the end of the tunnel. Yes we might all be rather helpless in the face of chronic fatigue syndrome, but appreciating that and shrugging it off as 'life' is important in moving forward. So let's all be helpless but hopeful together :)

PS- Wow, I've now had 500 page views from across 9 different countries! Thanks to everyone who has read my blog so far!


  1. This is where I am today Jess, bed-bound & medicated, all my senses on high alert. I hate what this illness has done, my husband is a super-star but it is so hard for him. I appreciate all that he does but as a once totally independent person relying on the person you love is so hard. My daughter Madison helps, she tidied the house & gives me special gentle cuddles but I am supposed to be looking after her not the other way around, she worries about me & gets anxious when we are apart, but that is my job - I should be looking after her! The frustrations are insurmountable. Thank you for your blog.huni

    1. Sorry to hear you're in a bad way at the moment, I hope some improvements are just around the corner for you. It must be so difficult to feel like you've now got such a different role within your family. I'm sure it must be incredibly difficult to have your daughter looking after you rather than the other way round (she sounds amazing by the way!), but I'm positive it will make her a much more caring, considerate individual than most and she will have a better insight into the suffering people face, which will keep her grounded in years to come.
      I definitely understand what you mean about the frustrations, I think frustration is probably what I feel most about this illness. Wishing you some better days very soon, Jess x