Finally Some Progress!

[Archives1]

My Neuro-Physio did it! She wrote a letter to the GP saying I can't return to work until the fatigue and brain fog has improved and that as she's not an FND specialist, I need a referral to London. Came very close to spending a ton for a private consult for a letter saying that so now I don't need to!

Also had a superb day out at the Harry Potter Studio Tour with my Dad at the weekend. The new powerchair was amazing - easy to fold up and get in the car, great battery life, could handle cobbles, lips, curbs and ramps etc. The difference not having to use a wheelchair manually at all has made to my fatigue is night and day - whilst still a bot worn out, wasn't completely decimated. They also had a changing places toilet which was a huge help. I think the kegels are paying off - only had one big accident. It was a bit overwhelming from an autism perspective now and again due to the crowds but I had my coping strategies (brought a stim toy with me) and was fine.

 

[Archives1]

My Neuro-Physio did it! She wrote a letter to the GP saying I can't return to work until the fatigue and brain fog has improved and that as she's not an FND specialist, I need a referral to London. Came very close to spending a ton for a private consult for a letter saying that so now I don't need to!

Also had a superb day out at the Harry Potter Studio Tour with my Dad at the weekend. The new powerchair was amazing - easy to fold up and get in the car, great battery life, could handle cobbles, lips, curbs and ramps etc. The difference not having to use a wheelchair manually at all has made to my fatigue is night and day - whilst still a bot worn out, wasn't completely decimated. They also had a changing places toilet which was a huge help. I think the kegels are paying off - only had one big accident. It was a bit overwhelming from an autism perspective now and again due to the crowds but I had my coping strategies (brought a stim toy with me) and was fine.

Hi @scififan;

Good to hear the update! I'm glad to hear you had a good time at the Harry Potter Studio Tour. I'm happy things worked out with your wheelchair and that you are now "rolling" in new wheels.

In regards to accidents. They happen, don't sweat the small things in life that feel bigger than they actually are. I suppose I'm my own worst critic in that regard; I remember when covid 19 occured and the memory of losing control in my motor vehicle still embarrasses me.

I think that's part of the reason as to why I isolated myself for so long in my apartment during Covid and bladder issues. Throw in a controlling Dad and Step Mother and it's a dangerous mix.

Psychologically, I guess being at home I could say to myself "I can make it"; and if I can't make it which there were days when I didn't - I tried not to think of it as an accident because nobody would know.

But anyway man. I'm glad to hear things are going well. I actually spent some good time with a friend of mine who just upgraded to a PS5 and the graphics are AMAZING. I thought of you because it made me want to get Lego Star Wars The Skywalker Saga (which I still haven't gotten unfortunately)

Take care bro -

Blessings In Christ,
Honeeecombs

 

[Archives1]

Very glad you definitely are making good progress and he physio person has helped rattle the pages.
Sounds like you had a good time at the HP event and have better locomotion for more outings of all sorts!

 

[Archives1]

@Honeeecombs Thanks! Yeah, I'm not beating myself up about accidents but the fact I'm having some relatively good days shows that at least I'm making some progress. I've resisted the urge to get a next-gen console as my laptop can still manage to play new games. I've been mainly focusing on sim-racing.

I get the thing about going out - I've got to be careful with the fatigue but I plan on trying to get out there and be more sociable.

@Maymay941 Thanks! Yeah, unfortunately doctors not taking chronic fatigue seriously's a fairly common problem. It's just a real pain as short sick notes = more appointments with the benefits people and the stress of having to deal with the GP every month. What's ridiculous is that they've made it impossible to book GP appointments so I can't speak to someone to clear things up.

 

[Archives1]

Kp asking the physio to advocate for you

 

[Archives1]

@scififan: That's awesome man. I can hear you about trying to be more sociable. I'm really trying myself to get out there and advocate for myself as well.

I agree in the sense that I'm not going to upgrade to a next gen console for at least a long while. I have an Xbox One and I'm pretty happy in terms of the graphics; I'm a little bummed in terms of performance because I have the Sims with all the packs and suffering from lag issues; but that's to be expected.

I suffer from fatigue issues as well. Sometimes I have to take naps during the day; but my body is weird. My bladder condition varies as my daytime issues vary spasm wise and nightime issues are pretty constant.

Keep pushing man. Life will keep getting better for you

Blessings In Christ,
Honeeecombs