Standing update!!! Join me in a celebratory sticky toffee ru..
Standing update!!! Join me in a celebratory sticky toffee rum liqueur, I have managed to stand (holding on obviously) for 30 minutes!!!!!
2023-11-16 18:03:01 +0000 UTC View Post
Standing update!!! Join me in a celebratory sticky toffee rum liqueur, I have managed to stand (holding on obviously) for 30 minutes!!!!!
2023-11-16 18:03:01 +0000 UTC View PostI'm not hiding, like in a cupboard, I'm in bed!!! lol But keep the messages coming, they bring me joy. Bed proof:
2023-11-15 15:22:18 +0000 UTC View PostOh no! I'm now in hiding in my own house lol. There is a stomach bug going around my boyfriend's son's school and he's been sent home sick with it. I don't want this one!!!!!!!!!!
2023-11-15 14:47:02 +0000 UTC View PostDoor update. So, a few people have asked how I have an automated door, several suggesting it might be like a supermarket. Though fun, I'm not sure how safe that would be lol. Basically, from the inside the door is always locked and is unlocked by opening it (as in turning the handle). When leaving, all I have to do is open the door, drive out, and a key fob allows me to close the door remotely (an...
2023-11-14 14:35:05 +0000 UTC View PostExciting door news lol I have been waiting soooo long for the right stock to come in, but now have a automatic level access front door so I can just drive on out at my convenience, how cool is that!!
2023-11-02 18:40:48 +0000 UTC View PostHa, I was feeling so much better when I updated on the 23rd (I think) and then was knocked for six that night. It was a really bad one, I've been practically asleep for days it feels like. I have been trying to keep up with at least my standing while ill though. I have managed to do three lots of 10 minutes standing (while holding on of course) each day for the past week. So I'm super proud of th...
2023-10-27 13:35:03 +0000 UTC View PostHey everyone. I've had a rather nasty cold these past few days and it made me rather sad. I know I have a lot of messages to get through, I'll be doing them over the next day or two. When I get sick, at first it's great, my immune system focuses on fighting the sickness and leaves me alone for once, so I actually have a day or so when I feel great. Then I get really sick and really stiff and usel...
2023-10-23 14:35:46 +0000 UTC View PostSo, good news and bad with my exercising today. I was super motivated for some reason (lol) and was excited to try. The good news is I was able to do my standing exercises, some squats and a VR workout I enjoy. The bad news is I couldn't get my legs to work on my recumbent bike. They kept colliding and it made it impossible to pedal. I've ordered a new set of pedals I can use while in my wheelc...
2023-10-14 15:20:31 +0000 UTC View PostI'm so grateful for the NHS. I read a story of an MS sufferer in the US who was practically stuck in the fetàl position. Her doctor had said botox would enable her to move around a bit more and actually function as a human being. Her insurance company said no and refused to pay. So she remains just stuck in place. The other week I went to see my MS specialist and, as it worked well last time, I...
2023-09-24 15:36:03 +0000 UTC View PostPhysiotherapy went well. She accepted that I couldn’t do a lot of the exercises I used to be able to and has given me new ones that are a lot easier. I’m hoping that it won’t take too long before I can get back to the old ones. I also have an appointment today to have Botox done on my leg again, so hopefully this will help in about a week or so so when it kicks in (lol, kicking might be unli...
2023-09-15 07:24:33 +0000 UTC View PostStill recovering though I am feeling better. Problem is I'm still as stiff as a board and barely able to do anything. And I've got my physiotherapist coming over tomorrow for an hour. I'm not looking forward to that, it's going to hurt!! I'll let you all know how it goes.
2023-09-12 17:21:53 +0000 UTC View PostI've been feeling under the weather for the last few days. Nothing too serious but I've stayed in bed. Today I'm so stiff and nothing seems to be working. It's always so disheartening when I'm sick as I lose so much and it takes ages to get the basics back.
2023-09-02 11:46:09 +0000 UTC View PostI cannot reply to any messages tonight because I keep getting an “internal error“ from only fans. Which is funny, as that seems like a good way to describe what’s wrong with me! Anyway, I am off to bed, I will reply to you all in the morning.
2023-07-25 21:57:44 +0000 UTC View PostI’ve had a really difficult few days! A friend of mine is going through something super tough and I’ve been trying to help. I’m sorry I haven’t been replying to messages since the end of last week, but I am still here (I haven’t been blocked again!) and I’m getting back to the messages today!
2023-07-17 12:24:11 +0000 UTC View PostWhile I was locked out puppy and I did some exploring!
2023-07-01 22:22:51 +0000 UTC View PostHey everyone. I literally don’t know what’s going on with my account but I got blocked again for 48 hours. Support just said they’d escalate it and now I’m back, but no word on what they did. So anyway, bear with me as I apparently come and go every few days haha
2023-07-01 22:20:52 +0000 UTC View PostI did a favour for a friend's niece and answered a bunch of questions. This is her summery. Maybe I should have been a bit more cheerful! I feel I must have painted a terrible picture of my life: Interview Summary Initial Reaction: The interviewee first experienced a sense of denial when diagnosed with Multiple Sclerosis (MS). The prospect of any mobility issues, even as seemingly minor as needi...
2023-06-25 06:41:22 +0000 UTC View PostThe promised suit update Ok, I know I left you hanging a little on the whole shocking suit thingie. To be honest I was rather devastated it didn’t cure me. It was a long shot, and I knew this. Everyone told me not to get my hopes up. But they had case studies of people like me that went from wheelchairs to marathons. But for me the benefits were very mild and similar to what I see with regular...
2023-06-25 06:14:17 +0000 UTC View PostUPDATE! Ok, so as predicted I got locked out again last night. I'm honestly clueless as to why I had access for an hour but I'm grateful I did. I could do anything except access my money on here. This lunch time I had heard nothing and was mentally preparing a final email that would ask them to do two things, first, post as me apologising for leaving and explaining it was out of my control. Seco...
2023-06-23 16:41:04 +0000 UTC View PostHey everyone. I'm allowed to post, but I don't know how long for. OF locked me out and the support kept repeating the same thing over and over and it didn't help and I was just devastated. I've not had access for a couple of days. It still says I'm locked out but for some reason I have access right now. I will keep at them and keep trying to sort this but if I disappear please know it's not me!...
2023-06-22 18:05:48 +0000 UTC View PostHey all I've been locked out of OF for a bit while I had to verify I'm me again, I've done this like three times now! Anyway, apologies for not replying to messages, I couldn't, but I will be on that today! I also need to write an update on my zapping suit, but I've been a bit down over it (spoiler). I'll post that soon!!
2023-06-17 10:38:18 +0000 UTC View PostQuick Suit Update So I'm under strict instructions to use it every 48 hours. So obviously I've been doing it daily. I'm back on my exercise bike, I haven't been able to use it in ages because of my right leg pulling inwards. It's not easy, and I can only do about ten minutes, but I can now use it again!! I haven't practised much walking but have been able to take a few steps, it's easier but f...
2023-05-27 10:28:50 +0000 UTC View PostMy boob appointment was funny actually. I could feel a bit of a lump so went for a checkup. The doctor checked and said "I can barely feel anything, my guess is just some fat necrosis". Then I guess she saw my horrified face and said "Oh, don't worry, it doesn't mean I think you're fat". And that was the end. I wasn't worried at the word fat, it was the necrosis bit that scared me!!!!! I'm not st...
2023-05-26 07:16:01 +0000 UTC View PostHey everyone. I know I’ve been a bit rubbish at messaging the last two days but I’m exhausted. It’s a mixture of the suit and I was worried about a boob appointment I had this morning. They are probably fine, which is a big relief but I do need to go get one more scan. Anyway, I’ll be getting to the messages tomorrow so please forgive my slowness.
2023-05-25 22:38:24 +0000 UTC View PostSo I tried something new today! I tried an Expulse Mollii suit; this suit uses electrical stimulation to stimulate muscles to counteract the spasticity that is caused by my MS. The suit has lots of electrodes on the inside, it stimulates the weaker muscles, and can often be as effective as physiotherapy. It's specifically programmed for my body by the physiotherapist after a full assessment of my...
2023-05-18 19:10:07 +0000 UTC View PostI went somewhere new today. My physio convinced me to visit a centre for people with MS. She wanted me to use the gym there and speak to the physios. It was a big place, they served food, had the gym, plus yoga studio, library and much more and it was full of people with varying levels of MS. The gym part was fine, I showed off my walking skills on the parallel bars, well, not on them, between th...
2023-05-11 13:40:12 +0000 UTC View PostYesterday I had to walk about 10m. I won't go into why but I didn't have my chair and had to make it on foot, holding on to my friend's arms. It took ages, maybe 10 minutes and was exhausting. But I made it! It's really hard to explain, but it's like I'm fighting three things. First, MS makes it really hard to get signals down to me legs to tell them what to do. Secondly, spasticity is still pu...
2023-04-05 09:05:04 +0000 UTC View Post*thinking I’m falling* “Argh, help!” “I’m literally holding you, I cannot help further, you are a two hand kind of a person” So yeah, need a new boyfriend who’s some bulky Adonis and sees me as a one hand kind of a girl, please!! Haha
2023-03-24 20:15:09 +0000 UTC View PostOkay, so this is not exactly a bookclub, but I’ve just finished a series of books and it was so incredibly amazing and I’ve got no one to talk to about them so I need one or two or dozens of you to go and read the Roseland books by Eric Ugland, and then come back, and talk to me about them! You are going to love them! Oh, I should probably say what they’re about, they are about a former stri...
2023-03-24 14:58:17 +0000 UTC View Post