I went to the hospital today to see the remainder of my new MS team. I had already met the physiotherapy side of things but this was a meeting with the neurology side. We went through a few things, repeating, as always, my history and what I can and can’t do.
They prescribed me some pills that will make needing go wee less urgent, to give me a bit more time to manoeuvre into place.
They also bent me all over the place to get the latest scores for what works and does not work. We had a chat about my goals and current status.
Nothing else particularly interesting, but it was good to see them and they seemed competent.
Oh, except at one point where the 20 something male doctor started asking my boyfriend about working out and such to lift heavy weights. First off, ouch! I am not that heavy. And secondly, wow, I am literally right here, stop flirting with my boyfriend! Haha
2021-12-20 16:16:11 +0000 UTC
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2021-12-20 15:39:37 +0000 UTC
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On my way to the hospital!
2021-12-20 14:17:30 +0000 UTC
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I think I bought too much stuff for Christmas! My chair has been moved to the back seat as there is no more room in the boot! I’m excited!
2021-12-20 14:06:02 +0000 UTC
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Good evening everybody!
I said the other day, and I have mentioned before, that I do not drink a great deal. Drinking is in fact something that is not good for people with MS
I usually didn’t drink, but the last few weeks I have had the occasional drink. Tonight though, for absolutely no reason, my boyfriend and I have had 1 & 1/2 bottles of rum. And I am very very drun k! We drank, we laughed, we had sex, we ordered food and we have crashed into bed. And for the first time in several years I honestly just feel normal! I really miss feeling normal!
So cheers, here’s to normal!
2021-12-18 21:28:55 +0000 UTC
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Q&A SERIES
Can you walk at all without an aid?
No. If you watch my walking videos you will see that I can walk a fair few steps using a walker. I am slower than a sloth but I get there. If you look closely you can see the amount of effort it takes to swing each foot forward. To do this I have to put as much weight as possible on the walker to balance myself and concentrate on swinging the foot. Without a walker, furniture, or another person, I cannot balance long enough to move my foot and if I try I will just fall over.
2021-12-18 09:02:42 +0000 UTC
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Q&A SERIES
What was the last song you listened to, book you read, movie you watched, game you played, drink you had?
I am cheating here as I have merged several questions into one.
Song - Backstreet Boys - I want it that way
Book - A Chill in the Bl**d by PN Elrod- I love reading and this is a series of books about a sort of vampire detective. Don’t laugh, it’s silly but it’s fun!
Movie - Jungle Cruise, I have a bit of a crush on The Rock, but who doesn’t?
Game - Genshin Impact - I also have a crush on Ningguang!
Drink - I stopped drinking a couple of years ago as there were a lot of studies that suggested alcohol was bad for MS. However a couple of months ago I decided to say screw it and started having a little drink here or there. It honestly helps me a little bit with my spasticity and I don’t think it has done any harm. Tonight I had a glass of Captain Morgan Tiki which is a rum and tropical fruit drink.
2021-12-17 10:08:08 +0000 UTC
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How much help do you need getting dressed?
This depends on what I’m wearing. There are some simple, around the house, outfits that I can get into and out of without any assistance. Loose fitting trousers and a camo vest or T-shirt would be absolutely fine. However I usually like to dress better than this.
Some items I definitely cannot do without assistance. These include bras and tights. A bra because I do not have the dexterity to do them up and the tights because I cannot balance long enough to get them on my feet and pull them up. I also, always, need help with my shoes as I cannot get down there to deal with them and I have trouble applying enough pressure to get my foot in. Whoever is helping me with my shoes usually finds it very difficult as they have to try and squeeze them in and I cannot help by adding that weight.
I also often need help balancing when I need to get something over my bottom as I cannot simply lay down and lift my bottom up, nor can I easily stand and balance while I pull them up.
I can, at least, still easily put on a hat! LOL
2021-12-16 18:10:59 +0000 UTC
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What is the one thing people do not understand about disabilities?
There are lots of things I think people don’t fully understand but the one that comes to mind is the amount of time it takes to do things. I still often plan my days as though I am able-bodied, like I will put aside a few minutes to shower or five minutes to get dressed. I still forget that a shower will take an hour and getting dressed at least 20 minutes but probably much longer. Simply moving from one part of the house to another, when I don’t have access to the chair, could take as much as 20 minutes. Getting from the house and into the car takes around 10 minutes instead of a handful of seconds. We won’t even mention going to the bathroom!
All in all this means that I get so little done in a day compared to what I would do before and this can be extremely frustrating, not just for myself, but also for those around me!
2021-12-16 07:06:03 +0000 UTC
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I told you last week that my physiotherapist recommended that I go back to doing crocheting. I did not want to do this really, I thought it would be very frustrating not being able to achieve much or go very quickly.
However, though it is extraordinarily taxing and, weirdly, physically exhausting. I have found it to help remarkably. Today I wrote a letter to my sister and my handwriting was so much better than the birthday card I wrote just this weekend.
My live in cameraman is in London on business tonight but I hope to film tomorrow a video of me crocheting and a video of me showing off my handwriting that you can compare to the last time I shared one of them! I cannot wait to show you the improvements I have made!
2021-12-15 20:51:28 +0000 UTC
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I went to see my physiotherapist today. In fact I am in the process of moving from a hospital-based MS team to a new community-based team and today I met with the physiotherapists from both teams at a neuro rehab gym.
First, they checked my muscle tone and my spasticity. They said that both were the same as they were six months ago which really surprised me as I thought they had gotten worse.
I then spent some time walking on the parallel bars, well, between them. I haven’t improved that much! And they said my walking was much better than they expected after checking my spasticity.
Next, they said they were going to source me a standing frame, this is something I can use to practice standing up for longer periods of time. I am super looking forward to this! They also said that they are going to arrange a new wheelchair for me as the one I’m using is no longer suitable. I did know this, and I have been thinking about buying one the last few months. The thing is, it felt like if I invested in a wheelchair then I was admitting this was a long-term thing. Where as if I’m just using one provided by the NHS then it is just a temporary loan, like when you break a leg. It is silly, I know, but it is important to me.
They also recommended that I take up crochet. I had mentioned that I used to do it when they asked me if I did anything difficult with my hands. I learnt to crochet years ago as I wanted to teach it to the children who I was nannying for, but I had not done it in many years because of losing sensation in my hands. I am not sure what I am crocheting yet, but my boyfriend has told me that he is in the market for a new scarf.
Finally, I asked them about the possibility of hydrotherapy. I have been thinking that this would allow me to practice walking without the fear of falling over. There are some places locally I can do it privately but thought I would raise the idea with them first. They said they have access to a dedicated hydrotherapy pool and will make arrangements!
2021-12-09 20:35:39 +0000 UTC
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Q&A is coming soon, I have been busy writing answers, but before that, some news:
I am in my wheelchair the vast majority of the time but I do take a few steps, here or there, where it is impractical to have the wheelchair, around our home. For these steps I hold onto my boyfriend’s arms. He has told me, countless times, that he cannot stop me falling if I am holding onto him instead of him holding onto me, but I have always insisted that I want to hold onto him because it helps with my balance. Today, as I took a step, my leg completely gave way and I fell backwards with my leg bending behind me. My boyfriend managed to slow my descent but not catch me out right and I landed on my foot. It is extraordinarily painful.
As it is already quite late, I don’t want to go to the hospital now. It might be broken, but I’m hoping that it is not. My boyfriend has carried me to bed and I’m laying here feeling sorry for myself.
Please, everybody, send good vibes to my ankle, I think it needs them!
2021-12-05 20:31:53 +0000 UTC
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I have done some videos for you to show my progress, or lack of it in some areas, but I’ll be sharing this week. In the meantime, tomorrow, I would like to do another question and answer post. So please send me a message asking anything you like and I’ll answer your questions tomorrow!
2021-12-01 20:05:19 +0000 UTC
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Side view
2021-11-21 22:07:43 +0000 UTC
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Walkies!
2021-11-20 17:15:11 +0000 UTC
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2021-11-20 06:51:41 +0000 UTC
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New hair colour!
2021-11-19 16:20:48 +0000 UTC
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I’m going for a walk…. Video tomorrow!
2021-11-19 15:39:29 +0000 UTC
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New videos coming this week, I have made so much progress and am feeling positive.
In the meantime, remember that a big part of this subscription is messaging me. Let’s have a conversation, it can be about whatever you like!
2021-11-16 19:51:38 +0000 UTC
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Big day today!
Alongside not sharing enough here, avoiding all social media, ignoring my friends, and generally becoming a bit of a hobbit; I have also not actually left the house in quite some time. I have been having appointments by phone or video conference, and making excuse after excuse why I can’t go out.
I have planned to resume my trips out, and my attempts to walk, for several weeks. I have come up with excuses why it would not happen each and every time.
Today, I also made those plans and I was ready to abandon them when my boyfriend insisted enough was enough, it was time to get out of the house.
I was not able to walk very far but I did take a few steps. This video is the entirety of what I could do, after this we went for a walk with my wheelchair. This is day one for my walking. I have had quite a few day ones but we are back here again!
I am so glad I went outside, I am so glad I was made to do it. Disability and depression go hand-in-hand and I do understand that I need to try harder. I am motivated to get back on the stepper, to get back to do my squats, to get back to trying to survive!
Much love, Chrissy!
2021-11-03 20:51:18 +0000 UTC
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Hey, I started this almost a year ago with this picture. I did it at a point where I was feeling pretty low about myself, and honestly thought it could not get worse. But despite feeling that way, I also had immense positivity for where it would go. It has been a funny journey since then because I could not have been more wrong.
At the time of this photo I thought the chair was temporary and by this time I would be sharing videos of me walking with a stick or even with no aid at all.
It’s okay though, I have spent the day thinking about it and I honestly believe that I still have that same spirit of hope that I had a year ago. And that if I work really hard maybe in a year I’ll be back to where I was and maybe the year after I will have improved even more!
2021-11-01 19:32:34 +0000 UTC
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Happy Halloween! 🎃 👻
I was invited to a Halloween party but I decided not to go. I do kind of regret it today but I don’t have a costume so I will have to miss out.
What are your plans for today? Anything exciting?
2021-10-31 11:10:37 +0000 UTC
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Hey, today we have a quick Q&A because I’ve had a few questions and I always like doing these!
What is the best thing about being disabled?
I don’t want to be all doom and gloom but to be honest I don’t think there is anything I particularly like about it. People might joke about good parking spaces or sitting around all day but trust me, none of it is worth it! If I could make it all magically go away I would do so in an instant.
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What makes the perfect boyfriend?
For me, I mostly look for safety and security with a person and their sense of humour. I I like someone who is strong and confident and, as I said, makes me feel safe. This has always been the case, not just now when I am more vulnerable. The sense of humour is probably the most important part, I need to be able to laugh. I don’t think I have a particular type when it comes to physical attraction, I’ve dated men taller and shorter, super big and super skinny. It really is all about how they make me feel.
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Who was your first celebrity crush?
Don’t laugh, but it was George W Bush! Old, grey, man in a suit with the ultimate power and authority. How could I not?
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What are you most thankful for?
Let me see, I am thankful that I still have my main senses, except touch really. That I can see, smell, and taste in particular. I love scented candles, flowers and things that smell beautiful. I would really miss it if I couldn’t smell anymore. I am grateful for my family for looking after me, and for the friends who stuck by me though sadly very few did. I am grateful for everybody here, you have shown such amazing support and encouragement. I am grateful for technology, I love my phone and it gives me an immense amount of freedom. I love the fact I can dictate these things, so I haven’t lost the ability to communicate.
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I had some questions about religion and politics, so briefly:
I am not religious anymore. I was, but then a number of things happened, not just getting MS but other things as well, that led me to believe that either God didn’t exist or that he wasn’t a very pleasant being. And I didn’t like feeling that way so I changed my outlook to be more spiritual without a specific religion or God. As for politics I suppose I am fairly central in UK politics which probably puts me quite far to the left in American politics. I voted for Labour in the last election, I used to vote Conservative (again, UK Conservatives, very different from American ones) but I have lost faith in them over the years. Brexit particularly took its toll on my feelings towards them.
2021-10-29 20:39:53 +0000 UTC
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Hi everyone. Here is the second day of my hand. And if you have your sound on I explain a little bit about what I’m doing. Apologies for the transfer board below me, the plan was to do it on a blank background but I couldn’t lift my hand up high enough for any longer. 💖
2021-10-28 20:48:00 +0000 UTC
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Hey the very first request I received was an update on my hand coordination using this classic neurology test. I think it’s about as good as it was last time I shared it, but let me know what you think! More tomorrow! 💖
2021-10-27 18:26:12 +0000 UTC
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I’m sorry that I’ve been gone for ages. I’m feeling a bit better but mentally I’ve been so down. I don’t know if it’s medication, something to do with Covid, or just that life is a bit shit!
Different medications do seem to cause me depression. When I start them my doctors insist they have very few side-effects and never mention depression, then when I asked them if it might be this that’s causing me to feel like this, they then tell me that, yes, it’s quite common. I’ve just stopped taking gabapentin and my mood seems to have lifted a bit. I’m now back on taking baclofen as a second attempt to see if this drug will work for me.
I want to make exercise videos over the next three days and then go for a walk on Monday. If anyone is still out there please message me a body part and I will exercise it tomorrow or Thursday or Friday. If I get more than three I will continue next week and I get through them all.
I can see that I have some messages and I’m going to check in tomorrow, right now I’m going to go to sleep!
I’m so sorry, I will try so much harder to be here, I want to, and it’s not like I do anything else all day, I will try harder!
2021-10-26 19:08:08 +0000 UTC
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Hand exercise
One of favourite things is playing games on my Switch, iPhone or iPad. So my hands being claw like make this really really difficult some days. I’m not ready to give this one up so I do focus pretty heavily on my hands.
This exercise is supposed to improve my movement and control of my fingers.
2021-10-16 08:49:28 +0000 UTC
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Oh, also I love questions and someone asked me one in messages so I want to reply here. Because it was funny, as it has been on my mind today. They asked what I dream about and if I dream of myself in my wheelchair.
Well, I only recently started having dreams of myself in my wheelchair, I took it as a sign of acceptance of my situation. I am still a bit unwell though so I’ve been having some super vivid dreams, you know, like you get when you have a fever. Last night I had a very weird dream about the characters from Genshin Impact. I dreamt that I was the Raiden Shogun and my boyfriend with Diluc. And we were having sex! Haha
2021-10-13 19:28:42 +0000 UTC
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I have delayed today’s video until tomorrow because I wanted to share a quick update!
So even though today is only, technically, day three, I was able to take a couple of steps already. Well, literally, two.
I’ll explain a little bit about what happens when I try and walk: Basically, once I’m in a standing position, which is achieved by my boyfriend lifting me into position, I can’t just get on my own. I will try and move my feet to walk. Now, imagine, you are taking a step. You attempt to lift the leg move it forward and place it down again. But it is not that simple because the rest of your body needs to also change position to follow the leg . When I am standing there and I am unable to take a step it is a strange sensation, but, it is like I am trying to move and I am pulling and pulling and it just won’t budge. Like my leg is weighed down and I cannot move it even a little bit. When I do lift it I do also often suffer from a thing called footdrop, which means my foot hangs down rather than lifting up, but at the moment I am unable to get any lift at all.
So today when I tried I was able to take a step with both my left and right foot but only one step each. After that they absolutely refused. But it’s a start!
2021-10-13 19:24:42 +0000 UTC
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This is my writing on day one.
Obviously, halfway through this my alarm went off, this is to signal I should take my medication. And you hear me say “never mind”, I was going to re-record but then I thought it was best to share how I did without the practice. So please ignore my medication alarm and my outburst.
Remember, if there’s something specific you would like to see, message me! More videos were recorded on day one, and they’ll be online over the next couple of days .
2021-10-12 07:13:05 +0000 UTC
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