Sleep
So I've been struggling to sleep for months, I'm a mum to 4 boys so I'm always doing something. I'm awaiting some medication to help me stay awake during the day and then I'm hoping to sleep at night!!! I fall asleep anywhere at any time , during meetings, dinner time/ prep. Any ideas on how to stay awake more during the day? Thanks all for reading. Berkshire UK. :--))
Hi Zara, I truly feel for you. My husband has SPMS & related fatigue (although the word doesn't do justice to the experience). I have ME/CFS. We decided not to have children for many reasons...but mainly because we knew we wouldn't have the energy. I SALUTE YOU! Re: meds to stay away. The usual stimulants (dexamphetamine, adderall etc.) can help with the staying awake part of fatigue (although, not always). I've found they do nothing for the complete wiped-out experience. If I've not got the energy to get up and/or use a toothbrush etc. Nothing works. Also, there are obvious downsides and it's very tough to get a prescription. Modafinil and armodafinil are alternatives. They are sometimes prescribed on the4 NHS (usually for narcolepsy), but it's theoretically possible to get them for MS (although, again, very difficult...or way to expensive (private)for most of us. My husband is trying fampridine. It does keep him awake sometimes, but he is still very tired and weak. It's early days...so maybe given time it will help. Some people say infra-red/near-infra-red light therapy works for them, but you'll need to get the right wavelength (?..I think that's the right term). Like everything, it's not for everybody. Good luck!
Thank you for your lovely reply , not many people say nice things about me having 4 boys! I've tried everything to help the extreme tiredness so medication is my last resort, no clue what it's called as I've forgotten, been waiting for it for 3 weeks to be delivered! My GP is slow at reading letters and getting stuff done quickly! Apparently I try it for 2 weeks at 1 pill at 7am, if that don't work then add another pill at midday and apparently that should help me stay awake and sleep at night! I don't hold my breath as my body wants to do what it likes, can't tell it to do something it don't want to! I have many other issues with my MS but the tiredness is just so bad, falling asleep at the dinner table, fell sleep standing while hanging out wet washing, you name it I've gone sleep. Best time was sitting on my shower chair with the shower on! Just completely fell sleep! 💤 haha! Oh I hope things improve!! I will keep you posted on what happens? X