Ok, I’m going to take all the help and make my life easier. Access to a lift, or a specialist shower wheelchair, or a loo that cleans me after, or anything else isn’t going to make me more disabled. I have thought about it. I have cried over it. But I have decided to just make my life easier first and then continue the fight to not need these things anymore second.
2022-07-12 20:09:44 +0000 UTC View PostHey everyone. I’ve had a tough day today an am exhausted. I know I’ve got messages to respond to but I’m afraid I need to go sleep. I’ll get back to everyone tomorrow, I promise!
2022-07-04 19:30:50 +0000 UTC View PostThis is as far as I can go climbing stairs. (Ignore the state of them, the new house is a work in progress). So I’m going to need help…. I have been talking to a few companies about stair lifts, trying to decide. But they do mean having two wheelchairs, one upstairs, one downstairs. Today a nice man suggested a through-the-fooor lift. Something I can wheel on in the living room and ride straight up into my bedroom. I’m tempted!! What do you think?
2022-07-01 20:41:24 +0000 UTC View PostI had a bit of a cry yesterday as I couldn’t do my squats. My legs just refused to move. But after a while I tried again and was able to do a few. I am so cross with myself that I let life get me down for so long. Constantly unwell, probably partly caused by my depression. But I’m already feeling stronger. Today I did 20 tiny squats. They don’t look like much but they were better than yesterday and I rewarded myself with passion fruit martinis
2022-06-28 21:34:02 +0000 UTC View PostRight, I am mostly moved in and ready to resume updates. Today I received my new bed which is higher than most (not a bunkbed) and means I can sit on the edge with my feet dangling down which is nice. I guess because I don’t usually stretch them in that direction, because I can’t, so gravity doing it feels great. Also gives me easier access in and out from a walker. This is optimistic as I am primary in the chair but I want to push towards being upright more often. I am dictating this in front of my friend who just said I had a similar goal as a teenager, very funny! I also got a new office chair. I wasn’t going to bother as I can just wheel there in my wheelchair but my boyfriend pointed out that it was good motivation to transfer to a different chair and also improves my quality of life having the different options around and not being restricted to just the chair. I can’t quite stand up from it on my own but with my bed being nice and high (for support while I do them) I can resume doing squats from tomorrow and hopefully regain that ability.
2022-06-25 19:00:03 +0000 UTC View PostHouse Q&A part 1 Is it a house or an apartment? It’s a house, 4 bedrooms, detached and in a quiet part of a city. Sorry I can’t be more specific. ——— Is it wheelchair accessible? Not yet. I’ve got someone coming in to talk about ramps and I’m investigating stair lifts. Handily though it already has a wet room! ——— Have you unpacked yet? Not even moved everything yet, let alone unpacked. AsK me again in a month! ——— Will you be taking in-calls at the new house? Short answer, no. Long answer, dude! I’m not a prostitute!!! ——— More soon!
2022-06-13 20:20:50 +0000 UTC View PostI get the keys to my new home tomorrow (there was a slight delay). I am so very excited!! So please distract me by sending me some questions and I’ll schedule answers to go out for the next few days!!
2022-06-12 11:30:00 +0000 UTC View PostHouse update! We got the house! Getting the keys next week and have convinced boyfriend we should slum it there while we do it up like we are newly married and in our new home. I can pretend his kids are lodgers or something haha So excited to be able to share some photos/videos again as I’ll have a dedicated space for you guys!
2022-06-01 20:21:33 +0000 UTC View PostI had a request for a video of my leg shaking in the outfit I wore the other day. So here it is!
2022-05-31 16:37:02 +0000 UTC View PostHey everyone! Today I went to my boyfriend’s son’s school for a jubilee picnic. I have not been out and about in ages and it was good to put on my favourite shoes again and get out in the sun!
2022-05-27 18:26:16 +0000 UTC View PostI am moving!!! I think, not quite finalised, but soon. So where we are now is lovely but it is not very accessible and can’t be easily adapted. Boyfriend is arranging a house we can slowly renovate and adapt. He is eager to remain here while we do it up but I’m going to convince him we should slum it there for the experience! I’m so excited to regain some freedom and self-reliance.
2022-05-18 20:57:04 +0000 UTC View PostSorry for the lack of updates this week! I have been so so tired. I have been sleeping day and night for most of the week. I think the cause has been a change in my medication, I increased the medication that reduces my spasticity and added in a new antihistamine. Last time I increased the spasticity medication I was also super sleepy so it is most likely the culprit. I am feeling much better today! In fact I left the house for the first time in ages today, I went for a short ride in the car. Nothing too exciting!
2022-05-12 18:59:29 +0000 UTC View Post
Good morning, have a great week everyone!!
2022-05-02 07:42:06 +0000 UTC View PostIn my last post I described what it was like when someone scratches on my foot. I explained that the it feels normal but the scratch feels like a super light touch. One of the comments I received was from one of my favourite subscribers and stated I mustn’t be ticklish then. This is an interesting point. Because I am ticklish down there. So even though the scratching felt like a very soft touch it did not have the same ticklish response as you would expect if I’d actually been touched in that light way.
2022-04-30 13:29:47 +0000 UTC View PostI often get asked what I can, and cannot, feel. Earlier this occurred to me so I thought I’d share: My foot was itchy. I can feel an itch as intensely as anyone. There is no sensation difference between now and years ago. My boyfriend came to scratch my foot (lucky guy haha) and he fixed the itch. But his scratching was something I could barely feel. It felt like he was lightly touching me, not scratching. But it worked just the same… Interesting.
2022-04-27 19:47:29 +0000 UTC View PostI had my neurology appointment yesterday and one thing that happens whenever I see this doctor is he spends the entire time talking to my boyfriend. Like the entire consultation is with him except whenever he says a word with more than eight letters in it in which case he turns to me and tells me what that word means. I must come across as a complete and total moron, I guess. The annoying part is though, it is patronising, rude, and turns me on so so much! Sometimes I hate that I’m like this but as soon as we were home I told my boyfriend to help me to my knees and to sit down…
2022-04-26 08:10:03 +0000 UTC View PostOff to see my neurologist today, wish me luck, I’ll fill you in later!
2022-04-25 06:46:58 +0000 UTC View PostOkay, who showed my boyfriend TikTok! Apparently because, and I quote, “you have difficulty feeling when you have plugged your phone in or not“. When I plug it in my phone now says “oh baby, it’s so big“ and when I unplug it Siri says “put it back daddy“. Super! Haha Edit: I have no idea how he did this or how to make it stop!
2022-04-24 10:11:36 +0000 UTC View PostQuick update - I’ve injured myself. I keep having body wide spasms at night that seem to squeeze my stomach and ribs. A really bad one the other night has left me with, I think, a bruised rib. And last night I was sick out of nowhere when it crushed my stomach. I’ll be honest, this could be my least favourite thing yet. Right now I’m sat, feeling a bit miserable, trying not to be sick and in pain with every single move. Super…
2022-04-19 08:56:40 +0000 UTC View PostI visited my grandma‘s house and she recorded me walking up the stairs. It is not the fastest job in the world but I think I did pretty well!
2022-04-11 20:10:15 +0000 UTC View PostOkay, my boyfriend came home quite late last night from his work weekend. Well, he was actually back in town fairly early but after a really tough weekend of wining and dining their clients what his team really needed was to be taken out for drinks and food! Not grumpy about that at all… Anyway! I have my notes. The other day I had a FaceTime conversation with a neurologist that my aunt wanted me to speak to. He is apparently a bit of a big name in MS and was doing my aunt a huge favour by looking at me. He was in Malaga at the time but he usually works between two or three hospitals around the world. I sent him all my notes from my doctor here as well as all the MRIs the hospital had on record for me. Apparently you can just go and get them, how cool is that? Firstly he thinks I might have moved from relapsing remitting multiple sclerosis to secondary progressive multiple sclerosis. This is a deterioration but given that I was having lots of tiny relapses it is possible this will actually be better for me. Though it does mean I will progressively get worse that progression could be quite slow. Next up he says it’s ridiculous that I have not been given Botox for my legs. He thinks that that will significantly help in my getting around as they will be easier to control. At the moment they have this habit of crossing over all the time and the Botox will stop that from happening. He said what is particularly odd about the fact I have not been given this is that it was the NHS who actually pioneered this treatment for people with MS in the first place, so it really should be readily available. Next up he recommended a new medicine, Mavenclad, this is a series of injections one year apart that not only prevent further relapses but also help to repair some of the damage previous relapses have done. Unfortunately, looking at the requirements for the NHS, this is not a medication I can have as I won’t fit the criteria. But he’s going to write a letter recommending it anyway and we’ll see what happens. Paying for it is not really an option, as each treatment is £40,000. And as much as my boyfriend loves me I’m pretty sure he doesn’t love me that much haha. Finally, and this one might cause a bit of a problem, he is putting in his letter that he would like me to go to a specialist friend of his in London for a second opinion. That one is going to upset my neurologist, so not looking forward to the reaction to that! But he is hoping that his friend can push for the alternative treatments if my neurologist still refuses. That was my most recent neurology update, I hope you’re having a fabulous week and I will see you all very soon!
2022-04-05 19:32:25 +0000 UTC View PostAll on my own! Big neurology update coming soon, was going to be yesterday, or today. The problem is my boyfriend took notes while I was on the FaceTime thing and he has gone off to a work thing for the entire weekend and is now out having dinner and I don’t have the name of the drug, and a couple other bits and pieces, so I can’t do the update yet. I ordered myself a vegan Chinese and I’m now sitting playing Genshin impact. I hope everyone has a super lovely weekend!
2022-04-02 19:56:44 +0000 UTC View PostI am super tired, actually I’ve been really tired most of the week but I’m not sure if it means anything, so a super quick update to say I’m going to write up a bigger update tomorrow. Basically I had a FaceTime consultation with some fancy neurologist that my aunt hired and he has several options that might help. Full update tomorrow!
2022-03-31 19:55:59 +0000 UTC View PostIt’s 4am and I can’t sleep. I’ve been listening to an audiobook series, pretty standard modern day murder mystery type thing. Anyway, I just started book three and the narrator goes: “Tuesday 14th April 2245” And my brain goes “wow, fucking plot twist!”. And the narrator continues: “Hours”. Oh, well looks like my short lived surprised Sci-fi twist didn’t happen, it’s another murder mystery in Shropshire. Anyway, good night!
2022-03-26 04:22:44 +0000 UTC View Post
Last MRI pic, this one says I actually have no boobs and have, in fact, the face of a demon!
2022-03-25 17:15:07 +0000 UTC View PostDoes anyone want to see my brain? That’s right, roll up, my most revealing video ever, it’s my MRI!
2022-03-23 17:43:05 +0000 UTC View PostHello everyone! I have had a nice little boost of subscribers the last few days so I thought I will drop one of my boring messages reminding you that one of the best features of subscribing is the ability to talk to me and ask me anything you like, absolutely judgement free! So send me a message and ask your questions. Or just let me know what you have been up to this evening? I have had an awesome evening sponsored by a rather lovely chardonnay by Alamos and Star Trek.
2022-03-21 22:41:20 +0000 UTC View Post