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.
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Thankyou for sharing this Lorna, it must be so difficult for you, and sharing this will inspire and help others x
Author
Thank you so much!
Oh, Lorna.. so sorry about this, didn’t know you’re going through something like this.
Don’t get yourself too tired, if you’re feeling so, better find time to relax yourself and nerves, hope it’ll help.
Take care always and hope it go away!
xoxo
Jhem | JhemSays.com
Author
Yeah, that’s what I try to do now, to pace myself. Thank you for caring xx.
Lorna, you’re so brave to write about this! It seems like you’re handling it well and have great people around you! A wonderful post! Thanks for sharing. I’ve learned so much from your blog
http://leftbankgirl.blogspot.com
Author
Thank you so much, I’m truly honoured to know that you have learned a lot from my blog. That’s my goal, so that’s wonderful!
Lorna you are a totally amazing and inspirational person. Thank you for sharing this, sending love and support!!
Author
Thank you so much!
Thanks for sharing! Great post!
xoxo Lynda
http://fashion-petite.blogspot.com/
Author
Thank you!
It was really good to share this, because now people who either have M.E, or are clueless, helping someone with it, can know what to do, or maybe even how to recognise when someone is going through it, or even try to slow down – I would say, you said that you recognise it, because of a day of tiredness, when you did too much. So I would say slow down, because you said that the sensation is not good – not really for the temporary paralysis, but because you can’t move and your ind is alert. But on the other hand it can happen once in 6 months and 2-3 times in a week, so you can’t predict it. I hope it happens once a year only, if there’s no chance of stopping it, so just once a year, not more! It was very nice to get to know you better, though though that, and you are a beautiful strong young girl to be admired!
DenisesPlanet.com
Author
Thank you for taking the time to reply to that. I would hope that it only happens once a year too, but we never know. It varies depending on good days or bad days, so some days you might do the same as you did the day before, but it’s too much for you. It’s so complicated!
It’s actually incredibly cool that you share these moments. I feel like it’s easy for people to assume fashion bloggers are somewhat shallow or unreal to the rest of the world. But sharing things like this prove that we are all humans… it unites us in a way. Besides that point, it is wonderful to learn about various conditions. I mean, what if someday I needed to help someone in a similar situation? It’s nice to know what to do! So the long story short: thank you for sharing and spreading awareness!
http://aroseisinbloom.blogspot.com/
Author
Thank you so much, I really appreciate that heart felt comment. We are absolutely normal people, with problems just like everyone else, it’s just we show a happier side of life for people to feel happy and inspired from, it wouldn’t be good if fashion bloggers were all so negative. Hopefully it helps some people!
Oh my. I hope that it will stop one day!! I’m so sorry for this. Gather lots of energy and try to recover.
♘ http://www.sugarpopfashion.com ♘
Author
Thank you.
Hi Lorna,
just wanted to say that this series of posts on M.E. is fantastic. Each one has been so well-expressed, and helpful both to me as a sufferer and to pass on to others. Looking forward to reading more. Warm and heartfelt thanks for sharing, you brave and fabulous lady 🙂
Rachel xx
Author
Thank you so much 🙂 I’m really glad that you find it helpful to you as well as others, that’s definitely what I’m trying to aim for!
Thank you for writing this very personal and informative piece. I’ve learned a lot in the last few minutes through reading it. The main reason I say this is that I quite literally have no prior reference point to relate/compare what you’ve written to. I don’t, so far as I’m aware, know anyone else who suffers from these symptoms. So… all the information you given here is new knowledge for me.
I really do admire you for your wish to help others and I’m sure this entry will be invaluable to many people who know sufferers now. None of us know what our futures hold or who will come into our lives so we can all, at the very least, file this information somewhere in our brains so that it’s there should we ever need to draw upon it. 🙂
I’ve said it before but I’ll say it again. I’m so impressed by all that you’ve achieved and by your outlook on life. 🙂 Inspirational really is the only suitable word.
And, on a slightly lighter note, I’d just like to add that I reckon that M.E picked on the wrong girl when it entered your life – because you’ve given it one hell of fight back and landed such a lot of punches against it. 🙂
Author
Steven that is so kind of you, thank you so much. I really, genuinely do look forward to reading your comments as you always put so much heart into them. It means a lot to me that you recognise strength in me and enjoy what I put out on my blog, thank you so much 🙂 I’m hoping that it will be of use to some people, even if it’s just one person, that’s better than nothing!
You’re very welcome. 🙂 I enjoy your blog very much – it’s always a pleasure to come here and read your articles and browse your beautiful photos. Your blog has such a welcoming and inclusive feel to it so commenting on it just comes very naturally to me here – whereas on other blogs I tend to merely lurk. 🙂
Author
Thank you so much Steven 🙂 I’m really glad you feel that way 🙂
I’ve been reading these posts with great interest and admiration for your courage.
Did this paralysis occur from the beginning of the condition or emerge later?
Author
It was maybe about 6 months into it, well, between 6 months to a year as when I first started getting symptoms, nothing was so bad, but that’s just the beginning so as things progress, more symptoms come in. It’s definitely a prominent symptom for me. Thank you for following my posts!
fabulous look, lovely boots
I wish you an happy day
a big kiss
<<< fashion blogger Pamela Soluri >>>
Thanks for sharing this! That sounds awful and I’m so sorry you have to go through that.
Molly and Stacie
Author
Thank you for your support.
So proud of you, though it must suck to deal with I feel you are doing a great job. I love all your info dear, you sure are helping a lot of people. Good luck!
RedLip&Love
Author
Thank you so much Tash!
It sounds terrible. Must be so difficult for you at times but I’m glad that you’ve learnt how to cope with this problem. And this is an amazing article for others suffering from this, very informative & inspiring!
P.S- I love that photo on top!!
http://www.rakhshanda-chamberofbeauty.com/
Author
Thank you so much!
I had total paralysis from my ME when I was pregnant, it lasted a few hours and I was admitted to hospital. Mine was the result of my husband being diagnosed with a brain tumour so not good timing. I do worry about it happening again, but luckily it hasn’t so I guess its another thing that is different for everyone. So sorry it happens to you regularly it’s a scary thing. Glad you are becoming aware of the onset and can deal with it.
Author
Oh my goodness, that sounds awful to have it while pregnant. How did they look after you in hospital? Were they really nice about it and ok with the situation?
Thank you for sharing this with us! I hope I can be understanding and able to help if this ever comes my way. I keep praying for a cure to ME
Natalia | Lindifique
Author
Thank you so much!
Thanks for this – I also have ME and seek to raise awareness where I can. Most people don understand that when I say ‘I can’t walk’, I don’t mean, ‘I’m feeling too tired to try walking’ I actually mean ‘I can’t walk.’ For me, it’s the legs that completely go, and I collapse. I’m not sure if I’ve ever had te full body. But it’s scary, all the same. Thanks for highlighting it.
Author
I’m really glad you liked the article, it’s horrible when your legs go and you can’t walk. It’s like you are trying to move them, but nothing is working. It’s good you haven’t had the full body version though, they are not nice.