For the next post in my Fashion Blogger With M.E series, I wanted to cover something that plays a huge role in my life and that’s temporary paralysis. To a lot of people, it can be extremely daunting and scary for them to experience someone with M.E going through this, as they can feel completely helpless, so I wanted to explain a bit more about it and share everything I can on the subject so that it can be helpful to anyone out there suffering with M.E or anyone looking after someone who is going through it. Not everyone gets this as a symptom, but a lot do and it’s one of the scarier and harder ones to handle.
What is temporary paralysis? This is literally where your body shuts down and you can’t move. The only way I can explain it would be very similar to a coma in terms of your body being completely lifeless, but your mind is fully alert. You can’t move anything, you can’t even keep your eyes open or move a little finger when it’s full blown, but your brain is perfectly awake and this is extremely frustrating because you want to move, you want to speak, you want to tell someone you are ok, but you can’t. You can’t do anything. But… it’s temporary.
Why does it happen? For me, it usually happens after I have exhausted myself too much and have done too much. This can be many hours before and you don’t really get a warning until later at night. I think your body gets so exhausted from doing everything before that it can no longer handle anything else and it shuts off. I can only explain it in a way that your brain stops sending signals of movement to your body because it’s too tired to do so and this results in the paralysation.
How long does it last? This can vary depending on how bad it is. I’ve had times where I’ve been fully paralysed for at least 45 minutes and only gotten some tiny bit of motion back in my fingers or to make a little noise after this amount of time, and then it takes about another 45 minutes to slowly come back around. Sometimes it wont be my full body that collapses and it will just be my legs, in which case, I probably can’t move them for half an hour (whilst they throb and feel like lead) and then they slowly come back around. You can just get random ones where maybe your jaw and the left arm will paralyse, but the rest of you is ok, but it truly depends on how much you have done and how much you have exhausted yourself without knowing. The more you did, the worse it is.
How do I know when it’s going to happen? You do get a little bit of a warning, but it’s not long. For me, I get about 5-10 minutes warning and because I’m used to it, I know how to recognise it. My legs start to feel heavy and weak and they get an aching sensation in them. My jaw also starts to feel like it’s hanging off and I generally start flagging and becoming weaker. When I feel this and I am aware of how heavy my body is, I know what’s about to happen.
How can I help the situation? The only thing I can say is as soon as you feel it coming on, you have to go and find somewhere comfortable to lie down. For those of you who haven’t been able to walk up the stairs to bed or find somewhere comfortable because it happened too quickly, you just have to sit where you are on the floor if you haven’t got anyone else around you to carry you to the bed or the sofa. It’s happened a few times to me where I’ve lost the use of my legs while in the bathroom or kitchen and I have either had to sit on the hard floor and wait there in a very uncomfortable position, or Adam will carry me and assist me. He truly is a wonderful support.
For those of you helping someone with M.E and they are going through one of these, be as gentle as you can and reassuring to them. We are ok, our brains are functioning and we are breathing ok (be sure to check that), so don’t worry too much. Just make sure you are careful when carrying them to somewhere comfortable and make sure their body is lying straight so the blood flow can get around really easily. This sounds more scarier than it actually is, they just need to be made comfortable if you can do that. This doesn’t help for everyone, but sometimes if Adam massages my legs a little bit for a while, it stops the throbbing sensation and it can bring them back to life a little quicker, but this is personal preference.
How often does this happen and don’t you get frustrated? As I mentioned above, it’s completely dependent on whether or not you are having a good or bad day and have done too much without knowing. I’ve had as many as 2-3 in one week and I’ve had as little as 1 in 6 months. You can’t really predict how often it will happen when you are learning to pace yourself, but once you get used to your body after years of having M.E and you know your limits, they do happen less. I hadn’t had a temporary paralysis for about 6 months and then over the past couple of months, I’ve been having set backs as my body has decided that it can’t cope with things very well lately, so it’s put a strain on me and I’ve had at least 4 in the last 2 months. 1 was a full body paralysis, 2 were my legs and 1 was my jaw and left arm.
I do get frustrated, a lot, especially when my mind is alert and I want to move and can’t. It can be extremely scary because if anything were to happen, you are unable to move and that’s a very frightening thought. This is why I never go anywhere on my own and I don’t like to be left on my own for long periods of time, just in case. Luckily I’ve always had someone with me when it’s happened so I don’t feel too frightened as I trust them to take care of me. Being very independently minded like I am, it can be tough to go through this and I sympathise with all of you in the same boat as me. The only thing I can suggest to help with that is to think of happy things or to try and think of a blank white wall while it happens. Try to block out any negativity as that can put more stress on your body and brain, making it take longer to recover.
– So, if I were to round this out, I hope I have covered everything for you within this text about temporary paralysis with M.E, but if there’s anything that’s missing or you have questions and would like to know more, please do just leave a comment below and I will respond to it for you. I truly hope it can give you some advice and enlightenment on the issue and help you get through it. Lorna xx.[showads728x90]