So last week I went to a presentation about CFS. I think it’s hilarious that they diagnose you with chronic fatigue and then make you go to a 2 hour presentation. Although that said, the girls who ran it were great and we did have regular breaks. I was rather reluctant in going but I had to go because I can’t be referred without attending one of these sessions first.
The sessions was actually very interesting. There were so many things that I hadn’t considered as symptoms of CFS, that I suffer from. They gave a whole wealth of info on how to manage the tiredness and I will be attending a further self management therapy course hopefully in the not too distant future. I also had some time to chat to other sufferers there which was great too, just to feel like I wasn’t the only one, that we all had similar experiences.
As a CFS sufferer I know there is a lot of misunderstanding about the condition. ME is another term for it, although for me that seems at the other end of the spectrum. In the 90s ME was often referred to as ‘Yuppie Flu’ due to the large number of professionals suffering from it. A not entirely helpful label, but it is actually quite an interesting observation, as it reflects the number of professionals who probably work too long hours and don’t take enough rest. So here are some things that might be helpful if you, or someone you know is suffering from the condition, and they could probably apply to any chronic condition actually.
1: When someone with CFS/ME says they are tired, please do not respond, ‘oh I know, me too, what a busy week’ particularly if you are their partner. It is not helpful and you are unlikely to be feeling as tired as they are. Sympathise and offer to take over/put kids to bed/make tea would be much more beneficial.
2. If you are CFS sufferer don’t use the term ‘tired’. It is misleading. What you mean is that you are utterly exhausted and cannot do another thing.
3. If you are at the stage above, then don’t do another thing! One of the things that came up on the session last week was the feeling of needing to carry on, even to just do one more task – often getting the dinner. Sitting down and resting for 10 mins can make a huge difference to your longer term energy. No one will die if they have to wait half an hour for their dinner, or have take away/sandwiches/beans on toast rather than meat & 2 veg.
4. Teach your kids to cook. Even very young children can help with cooking. My 5 & 7 year olds get their own breakfast every day for a start. (and they only spill the milk/juice/cereal over half of the kitchen…)
5. If someone close to you is diagnosed with CFS please take it seriously. In mild form it affects your energy levels, at worst you cannot get out of bed. The most serious cases require people to have a carer and feeding tube. If you do not want your loved one to end up like that, learn about their condition. Help them where you can. Allow them to rest – in fact encourage them to.
6. Routine. Ugh! hate that word, wrote about it yesterday, but it is necessary to manage your energy levels. Get into a routine that works for you and with your commitments.
7. Drop stuff. If you need to, give some things up. The PTA/rugby club/church will have to find someone else for a while. Carrying on when you need more time to rest will only add to your symptoms.
8. Accept help. when people offer to help they usually mean it. We 21st century women (probably men too, but thats not my area of expertise..) are not good at accepting help, we feel that we have to be super women. Get over it! You would help someone in need, so accept the help when you do. School runs/ play dates/ meals, whatever – just learn to say yes, and smile – even if you hate asking for help, do thank the person involved!
9. CFS is not the end of the world. It can be very debilitating but its unlikely to be life-threatening. Scream, cry, throw stuff, get angry if you need to, but let those moments pass and accept it. The most frustrating things about the condition is not knowing how long it will last. But worrying about that is only going to make you worse. Accepting that long term plans are not going to be made is quite liberating. Most of my close friends know about my condition now so if I have to cancel something last minute they understand.
10. Tell people. It’s not nice to have to accept ones weakness, but not telling people means they just get upset or cross when you have to let them down or have to cancel plans. If they know then they will understand when these things happen.
I am sure once I do this course I will have more to share, but these are from my recent experiences, so I hope they might be helpful.