As most of you know, I have condition called ME. I've done a full post about exactly what that means (here) and today I want to share with you how I deal with a relapse.
ME is the kind of condition that's always there but there are times when it's better or worse. For the past month or longer, I have been in a phase where it's been significantly worse. The pain has been even more intense and for the most part, I haven't been able to get out of bed until recently. It was getting to the stage where doing the smallest thing, like brushing my teeth, was difficult.
My mum then said that it might help to look back at the notes from my Cognitive Behavioural Therapy. That was the best advice. I went through all of the notes detailing the methods I used to help myself climb out of the biggest rut I've ever been in. If you have ME and have gone through some kind of therapy to help, the best thing to do when going through a relapse is to look back on what you did to help your condition.
If you haven't tried CBT, talk to your GP about a possible referral. I was really sceptical at first. When my doctor told me I was being referred to a physiologist I thought "great, now the doctors think it's all in my head." I hated first few sessions. I never thought it would work, but it did. Slowly but surely, I was seeing improvements. Now, when I have a bad flare up, I can use the same methods as before. I really do recommend trying CBT; it is definitely worth it. As long as you find the right person, it can make a huge difference.
When going through a relapse, patience is also really important. Your body needs time to recover. If you need to rest in bed, do it. If you need to sleep, sleep. Remember that you have absolutely no reason to feel guilty. I know it's easier said than done, believe me I do. I still feel guilty when I have to rest in bed or if I can't go out to meet friends. It's like there's a voice in my head saying "you should be able to do that, what is wrong with you." The best way I've found to deal with these thoughts is to acknowledge them and let them go. It's what I was taught in CBT and it really does help. Dwelling on the thoughts will only make you feel worse and aggravate your symptoms.
I would like to point out that it's ok to feel emotional. Going through ME is extremely difficult and at times it will make you feel like crap, physically and emotionally. Just like any normal person, having a down day or even several down days is ok. Think of it like a blip in the system.
When I'm going through a relapse, I like to watch my favourite TV shows and movies. It helps distract me from the pain. I managed to get through a six season TV show in a week during my latest flare up!
In terms of dealing with the physical side of things, I find sitting with a hot water bottle helps soothe the pain. If you feel nauseous, try making tea with ginger, mint and a touch of cinnamon. Ask someone to heat a pan of milk with a bit of ginger, about 2 leaves of mint, a sprinkle of cinnamon and 1-2 tea bags depending on how strong you like it. Bring it to the boil, stirring occasionally and turn down the heat allowing the tea to simmer for a couple of minutes. Strain it in a mug and add sugar to taste. This really helps me when I'm feeling sick and it's also great if your stomach is sore or unsettled. The ginger and mint will help settle everything down.
Advice for Family and Friends:
If you know someone who is going through an ME relapse, it can be difficult to know how to help them. A lot of the recovery has to be done by the person themselves. Just let them know that you're there for them and you support them. If you have a friend going through it, reassure them that it's ok if they can't make plans or if they can't meet up. Like I said before, guilt is a huge part of ME, so that reassurance that it's ok, can really make a difference. If you know that they are currently not well, send them messages. It can be about anything! Even if they are not able to respond straight away, it will distract them from the pain and might make them feel just that little bit better.
I also want to mention that if you are a family member or friend of someone going through ME, it's ok to feel angry. Angry that you can't help them and even angry that the person isn't able to do anything. I know that sounds bad but it is a natural feeling. Acknowledge it and let it go. It's better to deal with the anger than to let it build up and end up with both parties resenting each other.
I do want to address the issue of people not believing ME is a 'real' disease. It is. I would not wish this disease on anyone. It takes a lot of emotional and physical strength for someone with ME to get through the day and to have people say the condition isn't real, is like a slap in the face. If you are in doubt over how 'real' this disease is, do your research.
Before I put this long post to bed, I want to say thank you to everyone who reads this blog. I never thought this would be possible so it really does mean a lot when someone reads it! Also, if you have ME (or any other chronic illness) please remember that you are strong and it will get better. Good luck!
Thank you so much for reading. I hope it wasn't too long!
Avani
xoxo
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