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Archives1
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Thanks for asking for a status update! I can take lengthy breaks from here and from doing more active of stuff in general really. It often boils down to feeling tried at night and by the time I shower just going to bed as showering tires me out.
Doing as well as can be expected. Definitely improving very slowly but surely thanks to the osteopath. I find I've got to temper my Dad's expectations a lot though. I'm under no illusions about the extent of my problems and am aware that it can be a very long time to complete recovery (if at all!) from Chronic Fatigue and as Long Covid has its own idiosyncrasies it's a bit different. My goal is to be well enough to go back to university next Autumn but I expect to still be needing a powerchair for long distances and to be careful with pacing. I'm confident that I can make a strong recovery over time but my Dad's a bit too over-optimistic really, talking of plans in the relatively near future and saying "hopefully you'll be better by then." I'm really not finding that helpful! I've learned re planning things, I can only plan for how I'm feeling today and if I'm better than I am today when whatever I've booked rolls around then great but if I push myself too much then it all goes to pot.
Had a couple of fun outings, went to the Cross Roads convention for the TV show Supernatural which was huge amounts of fun and as it was all based in a hotel was able to drink and socialise and feel like a regular person my age! Booked to go to a couple more of the events by the same organiser as it was really stress free and having the accommodation and event in the same building really made things much easier. Getting to Birmingham was a bit of a nightmare though! Last weekend went to the MCM Comic-Con in London and had a blast. Was planning on just travelling in each day to save costs but am not up for that yet so ended up getting a hotel. A full day out a couple of days before with my Dad was a very good reminder to not push it! Was reminded of how I felt when I was at uni and it showed that it's more my coping mechanisms that have helped re the fatigue rather than the fatigue itself actually improving.
Incontinence wise am able to make it to the toilet now and again but every time I try with lesser protection end up hugely regretting it. Still very unpredictable but feel things are moving (again very slowly but surely) in the right direction. Price hikes have been noticeable and so I'm really hoping I can at least get by on thinner products at some point in the future.
Doing as well as can be expected. Definitely improving very slowly but surely thanks to the osteopath. I find I've got to temper my Dad's expectations a lot though. I'm under no illusions about the extent of my problems and am aware that it can be a very long time to complete recovery (if at all!) from Chronic Fatigue and as Long Covid has its own idiosyncrasies it's a bit different. My goal is to be well enough to go back to university next Autumn but I expect to still be needing a powerchair for long distances and to be careful with pacing. I'm confident that I can make a strong recovery over time but my Dad's a bit too over-optimistic really, talking of plans in the relatively near future and saying "hopefully you'll be better by then." I'm really not finding that helpful! I've learned re planning things, I can only plan for how I'm feeling today and if I'm better than I am today when whatever I've booked rolls around then great but if I push myself too much then it all goes to pot.
Had a couple of fun outings, went to the Cross Roads convention for the TV show Supernatural which was huge amounts of fun and as it was all based in a hotel was able to drink and socialise and feel like a regular person my age! Booked to go to a couple more of the events by the same organiser as it was really stress free and having the accommodation and event in the same building really made things much easier. Getting to Birmingham was a bit of a nightmare though! Last weekend went to the MCM Comic-Con in London and had a blast. Was planning on just travelling in each day to save costs but am not up for that yet so ended up getting a hotel. A full day out a couple of days before with my Dad was a very good reminder to not push it! Was reminded of how I felt when I was at uni and it showed that it's more my coping mechanisms that have helped re the fatigue rather than the fatigue itself actually improving.
Incontinence wise am able to make it to the toilet now and again but every time I try with lesser protection end up hugely regretting it. Still very unpredictable but feel things are moving (again very slowly but surely) in the right direction. Price hikes have been noticeable and so I'm really hoping I can at least get by on thinner products at some point in the future.
Archives1
Staff member
Hey @scififan:
I'm still looking forward to Hogwarts Legacy man. I traded in Lego Star Wars - but maybe I will return to it in the future; we'll see. I'm trying to get back into simulation gaming but working on trying to get back into an apartment.
Right now I am living in a temporary residence and my mental health has been up and down. I can relate on people being too optimistic - sometimes I have good days, other days not so much. I don't know.
I know it sounds crazy - but I always feel like someone is playing headgames with me or gaslighting me in such a way- and I know some of it is true but the other stuff I have to tell myself I suffer from a mental condition.
I can't hold down a job at the moment due to the mental illness; but am trying to pick myself and brush myself off the best I can. Bladder problems aside from the PTSD is a walk in the park.
I still think of you from time to time- hoping you are doing well. It's always good to hear an update.
Blessings from across the sea,
Honeeecombs
I'm still looking forward to Hogwarts Legacy man. I traded in Lego Star Wars - but maybe I will return to it in the future; we'll see. I'm trying to get back into simulation gaming but working on trying to get back into an apartment.
Right now I am living in a temporary residence and my mental health has been up and down. I can relate on people being too optimistic - sometimes I have good days, other days not so much. I don't know.
I know it sounds crazy - but I always feel like someone is playing headgames with me or gaslighting me in such a way- and I know some of it is true but the other stuff I have to tell myself I suffer from a mental condition.
I can't hold down a job at the moment due to the mental illness; but am trying to pick myself and brush myself off the best I can. Bladder problems aside from the PTSD is a walk in the park.
I still think of you from time to time- hoping you are doing well. It's always good to hear an update.
Blessings from across the sea,
Honeeecombs
Archives1
Staff member
Just had 1st lab work since RP for PSA check today - I get the results on 11/11 on next Dr. visit.
Hope all is well...we shall see!
Incontinence continues to get better, but hard to believe will ever be 'normal' again. Time will tell.
ED issues persist...no real progress there - say that takes longer! :..(
Patience is a virtue (that I don't have much of! but I am learning!!!)
+God+bless+ to all!!!
Hope all is well...we shall see!
Incontinence continues to get better, but hard to believe will ever be 'normal' again. Time will tell.
ED issues persist...no real progress there - say that takes longer! :..(
Patience is a virtue (that I don't have much of! but I am learning!!!)
+God+bless+ to all!!!
Archives1
Staff member
@Honeeecombs Yeah, I just couldn't get into Lego Star Wars too deeply. Sorry to hear about your mental health issues, hope things improve. Been getting back into the Resident Evil series in a big way, finally watched the latest film on Halloween and it made me want to catch up and it also made me get back into horror movies in a big way. May seem weird but I find horror movies really help when I'm not feeling great. I wonder if it's because I can often feel emotionally numb when under stress due to the autism and it's a way of evoking a response.
I hear you on the work front - I have friends who are furthering their careers and I'm back at square one or rather it feels like square zero. Don't get too down about it though. I'm finding progress physio wise a bit odd in that it feels like all the strength is building in my good side but the right side is just lost. So the left side's getting stronger but the neuro issues on the right side don't seem to be shifting at all and the fatigue and brain fog's a constant. It's still relatively early days though. If I didn't need the wheelchair life would be a lot easier that's for sure but maybe I need to temper my expectations.
I always feel a bit down at the end of the year but have things to look forward to next year. I've pushed myself a bit and booked to go to the For the Love of Horror convention in Manchester next November as it looks like a great event with a mix of nerding and live music and hotel prices in London are getting so insane it still works out cheaper when you factor in travel up there. I'm hoping I may be a bit fitter by then but the city looks very accessible. It's weird, it's not like I haven't been there several times before but it feels like a big deal in a wheelchair. My hope is by next November that either a) I'll be fitter or b) I'll have worked on my confidence and be more confident travelling around. This year getting to Birmingham was a big deal, going a bit further next year. My hope is to eventually be confident enough to travel abroad again.
It's really the brain fog and fatigue which are still stopping me from going back to studying or work. I guess as another year goes by I can't help but feel I'm at the learning to live with it stage but I keep fighting and hoping I'll improve significantly.
I hear you on the work front - I have friends who are furthering their careers and I'm back at square one or rather it feels like square zero. Don't get too down about it though. I'm finding progress physio wise a bit odd in that it feels like all the strength is building in my good side but the right side is just lost. So the left side's getting stronger but the neuro issues on the right side don't seem to be shifting at all and the fatigue and brain fog's a constant. It's still relatively early days though. If I didn't need the wheelchair life would be a lot easier that's for sure but maybe I need to temper my expectations.
I always feel a bit down at the end of the year but have things to look forward to next year. I've pushed myself a bit and booked to go to the For the Love of Horror convention in Manchester next November as it looks like a great event with a mix of nerding and live music and hotel prices in London are getting so insane it still works out cheaper when you factor in travel up there. I'm hoping I may be a bit fitter by then but the city looks very accessible. It's weird, it's not like I haven't been there several times before but it feels like a big deal in a wheelchair. My hope is by next November that either a) I'll be fitter or b) I'll have worked on my confidence and be more confident travelling around. This year getting to Birmingham was a big deal, going a bit further next year. My hope is to eventually be confident enough to travel abroad again.
It's really the brain fog and fatigue which are still stopping me from going back to studying or work. I guess as another year goes by I can't help but feel I'm at the learning to live with it stage but I keep fighting and hoping I'll improve significantly.
Archives1
Staff member
@scififan: it's so good to hear from you my man. Gets my spirits up because I feel less alone in this world.
Lego Star Wars was kinda a one and done for me at the moment so I didn't really have much remorse trading it in - I guess I'll come back to it at some point (Lego games make good co-op games but I don't really have much friends to play with) - but Resident Evil is great fun! I've actually been wanting to start getting into the suspense genre again - I tend to watch others play it on twitch. Horror movies are always good fun too - just finishing up an 80s movie tonight actually.
As far as your mobility issues - I'll always have your back if you want to talk; don't let it define you man. I mean it when I thought of you when I saw a decent power scooter near me; cause I wish more people who have mobility issues have easier access to better quality products, etc.
A person I know is actually going to be in the London area and I got thinking of you cause I know you went to the Harry Potter Studio Tour - are there plans to put a Harry Potter theme park in the UK? I know they have one in the states here - but the UK I think deserves one as well.
Still gearing up for Hogwarts Legacy.
Your friend,
Honeeecombs
Lego Star Wars was kinda a one and done for me at the moment so I didn't really have much remorse trading it in - I guess I'll come back to it at some point (Lego games make good co-op games but I don't really have much friends to play with) - but Resident Evil is great fun! I've actually been wanting to start getting into the suspense genre again - I tend to watch others play it on twitch. Horror movies are always good fun too - just finishing up an 80s movie tonight actually.
As far as your mobility issues - I'll always have your back if you want to talk; don't let it define you man. I mean it when I thought of you when I saw a decent power scooter near me; cause I wish more people who have mobility issues have easier access to better quality products, etc.
A person I know is actually going to be in the London area and I got thinking of you cause I know you went to the Harry Potter Studio Tour - are there plans to put a Harry Potter theme park in the UK? I know they have one in the states here - but the UK I think deserves one as well.
Still gearing up for Hogwarts Legacy.
Your friend,
Honeeecombs
Archives1
Staff member
@Honeeecombs Yeah, I got very lucky getting funding for my current one and it is nuts how much some go for. The thing is it's a trade off really as you can get these amazing looking ones which don't fold and are insanely heavy. The bonus with mine is that it can fold so I can hypothetically use Uber Assist as it'll fit in a car boot. With unfoldable ones you're just limited to adapted vehicles which is fine in cities with black cabs (i.e. London taxis - Oxford and Manchester use them and probably some others I don't know about) but you're stuffed with other ones. Also, most ramps have a maximum weight and some of the heavy duty chairs exceed that. The number of taxis is non existent in my immediate local area anyway though and folding it and unfolding it knackers me out so it's best avoided wherever possible (and I get to avoid sitting on the floor).
The way I see it the main barrier is my right side neuropathy as, in addition to the pain, I can't weight bear on my right side without it jerking out or spasming. I've come across this thing called the iWalk which is a non-weight bearing crutch so if the fatigue ever subsides enough it could be an option: iWalk. I may raise it with my osteopath as it could be something to work towards. The fatigue's the biggie though and too much exertion also sets off my lungs. The other issue would be that my right hand's unreliable snd I'd probably also need a regular crutch
on my left side for it to be viable. Looks like it'll be the powerchair for a fair while yet!
Re the HP theme park, I don't think there are any plans. There was a mooted British TV/film theme park years ago but it never came to fruition. The studio tour's amazing though so I don't think it's really necessary. It's very much a whole day thing at the Studio Tour and I'd love to go back when it's less busy and if I ever am less fatigued as I started to flag towards the end. There's also a Game of Thrones Studio Tour in Northern Ireland and you can do tours of the locations. I visited a few locations back when I was more mobile!
Re Lego Star Wars, I think it reminded me why games stopped just adapting movies wholesale and made their own stories in the universes. I'm glad I got it on Switch as I find it's a fun pick up and play game but too much and it starts to drag. I think I'm also a bit done with open world games. There was a horror game called The Medium which came out last year and whilst it had its flaws, it was nice to have a narrative focused game I could finish in a weekend. The people that made that are remaking Silent Hill.
The way I see it the main barrier is my right side neuropathy as, in addition to the pain, I can't weight bear on my right side without it jerking out or spasming. I've come across this thing called the iWalk which is a non-weight bearing crutch so if the fatigue ever subsides enough it could be an option: iWalk. I may raise it with my osteopath as it could be something to work towards. The fatigue's the biggie though and too much exertion also sets off my lungs. The other issue would be that my right hand's unreliable snd I'd probably also need a regular crutch
on my left side for it to be viable. Looks like it'll be the powerchair for a fair while yet!
Re the HP theme park, I don't think there are any plans. There was a mooted British TV/film theme park years ago but it never came to fruition. The studio tour's amazing though so I don't think it's really necessary. It's very much a whole day thing at the Studio Tour and I'd love to go back when it's less busy and if I ever am less fatigued as I started to flag towards the end. There's also a Game of Thrones Studio Tour in Northern Ireland and you can do tours of the locations. I visited a few locations back when I was more mobile!
Re Lego Star Wars, I think it reminded me why games stopped just adapting movies wholesale and made their own stories in the universes. I'm glad I got it on Switch as I find it's a fun pick up and play game but too much and it starts to drag. I think I'm also a bit done with open world games. There was a horror game called The Medium which came out last year and whilst it had its flaws, it was nice to have a narrative focused game I could finish in a weekend. The people that made that are remaking Silent Hill.
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