Got to Keep Fighting!

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Having felt really low and pretty much resigned to a miserable existence for the rest of my life I'm starting to feel more positive again. Reading up about Chronic Fatigue and the importance of pacing made a lot of sense and, whilst it seems obvious with hindsight, one of the key points is that mental exertion also causes fatigue and overdoing it can make brain fog worse. Thus, I'm going to stop beating myself up about uni work and not push myself doing it because it's making things worse. Bottom line is I have a serious medical condition and it's a miracle I get out of bed each day, let alone try and read academic texts - the assignments will be done when they're done.

I attended a really great webinar organised by the University of Leicester Hospital on Long Covid hosted by a really wonderful doctor who restored my faith in the medical profession. Lots of great advice and potential treatments - acupuncture's apparently good for it. Pacing came up again - the bottom line seems to be get the pacing right and get treatment and you can make a recovery. Don't expect a cure but a better quality of life is possible.

It also summed up the issue with the area I live in. Essentially there are three pathways for treatment - within the community (i.e. self-care), basic physio/counselling and then a third pathway for the severe cases (people like me effectively!) where you get sent to specialist centres. The issue is that there is no specialist centre where I live. The local hospital has an arrangement with King's College Hospital in London as, being so close to London, it makes sense to not split resources but they've flat out refused to take people with Long Covid from outside their area so I'm left with nothing. However, the doctor who gave the talk said it is possible to get referred to their specialist pain clinic in Leicester which has a specialism in chronic fatigue. Once the MRI comes back I'm going to push for that. I still find it disgusting that no doctors locally care at all about how much I've deteriorated and I've effectively got to get advice from doctors giving online talks because mine are so useless!

Bottom line is - I'd basically given up but I'm going to keep fighting! Oh and the council got back and they're going to do an assessment re care needs and my housing situation given I'm unable to leave the house due to where it is due to wheelchair inaccessibility and I've found some jeans that work well so some little victories as well! It's just frustrating that it's a postcode lottery when it comes to whether you get proper medical care.

 

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Hey man;

When it comes to Healthcare in the United Kingdom I think many people dont realize how on par it is with The United States.

I suppose thats what makes us United I guess hahahaha. I had penpals from overseas in High school; and I remember doctor and specialty appointments had a really long wait time compared to the US. I'm not sure on quality or cost though.

Don't give up, never give up. Regardless of what situation you are in, you are doing the required steps to advocate for yourself. That is saying something more than other people. It's your body after all, and while I was never diagnosed with chronic fatigue, I can relate to the feeling over always being tired on some days.

I've slowly built up my hours at work due to low energy levels; and I think the pain and constantly urgency from my bladder condition takes a bit from me; but also it may be tied to the antidepressant that I am prescribed. I'm not sure.

Keep pushing man - by the way, there rumors going around that Hogwarts Legacy is getting pushed back again.

D'OHHHHH.

HC

 

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@Honeeecombs The issue is that our government don't put as much money into our state healthcare service as our European neighbours put into their own and it shows. I think it is just extremely awful where I live and worse than most places. Medway is prime commuter belt, being only 30 miles or so from central London and with property prices in London going up and up, more and more people are pushed out of London and move further out but the government don't invest in infrastructure. Normally the London hospitals take patients from around here but Long Covid's a different story now, I'm guessing because the number of cases has risen since summer 2020 when it started being noticed.

Shame about Hogwarts Legacy.

 

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Sci Fi Fan you are resilient , like your sport teams you make a came back, like your intrepid space comrades you find solutions to problems where no council resident has gone before.

Maybe you will be the one blazing in disability access and Covid clinics with your determination

 

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@Honeeecombs Nobody in the UK ever went bankrupt through being sick.

 

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@Honeeecombs @Sci_Fi_Fan My mom is from the UK and all but two of our family members on her side are there. I can easily say from what I’ve experienced with my English relatives over my lifetime and more recently what I’ve read here about “free” medical care in the UK is that it’s horrid. First of all, it’s a myth that it’s free; they pay extraordinarily high taxes for it. They also have copays just like we do, but that’s on top of their taxes. We don’t pay high taxes - at all, so we don’t get healthcare for “free.” Decent public health works in basically only Sweden. In the UK or Denmark, you better have both private AND public health insurance. Also, you don’t get to decide when and where you’d like to see a specialist: the government gets to decide, and they’ll call you, not like here where we get to call them. The hospitals there are old and run down. Very few patients get their own rooms; most are in large wards of 4-8, something you would never see in the US, nor even at a Medicaid/Medicare-only hospital.

Sci_Fi_Fan is a great example. Look at how long he has had to wait to see a specialist or get longhaul answers. Nobody in the US on the forum talks about such things because they don’t really happen here. So Mr. Sci Fi, I really feel for you and all in the UK. I’m sorry they’re always so backed up. My grandmother died young of a hip replacement blood clot because nobody helped her move for 5+ days, nor did they bother to call any of her children when she died! It took us weeks to get any answers!

 

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@snow It's a funny one really. I was always very cynical about the NHS and, having lived in Wales for a fair few years from my late teens until my mid-20s where things are worse, I basically thought it just wasn't fit for purpose. Fast forward to a family member's health issues and my opinion changed completely - the hospital they had a big operation in was like something out of Star Trek. I feel the issue is very much with diagnoses over here. The 'triage' level is appalling with most GPs being useless resulting in people waiting ages, however once you end up in the right area things improve dramatically. It also varies greatly from area to area.

In terms of Long Covid itself, the UK's far behind the curve on this and I do think it's partly political. It still isn't a recognised disability here (I was pleased to see it was made one in the US!) and I wonder if it's because the government don't want to admit there's a chance you could get serious long-term complications from a virus they refuse to take seriously (indeed, they've announced ending all safety measures today and doing away with isolation in March!).

Changing the subject a bit - another positive day today. Managed to sort of community transport to my MRI scan which is cheaper than a taxi and I can take my wheelchair. I also had a positive chat with the disability guy at uni who recommended I apply for a grant from a disabled students' organisation and get one of these:
clickable text.

It folds up to a suitcase size meaning I should be able to get taxis more easily (and indeed, in and out of the house) - there are potential issues as I don't think I have the dexterity to assemble and disassemble it and I do wonder how sturdy it is. However, it's probably an avenue worth exploring.

Frustratingly, there are activities for disabled people a short train ride away. I really miss being able to run but there's a powerchair football group in Greenwich and a wheelchair basketball group in Brixton but nothing in the immediate area. There are activity centres I'd be eligible for but nothing overly interesting. Thus, being able to get out more easily would be a huge bonus.

 

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@Sci_Fi_Fan: How are things going on this situation man? I was thinking about you today and just want to make sure things are on the up and up for you.

I don't know exactly where you are but is there any other power chair clubs or sports or intermural activities that are located where you live? It's hard I'm sure if you are in a rural area - but regardless able bodies or not - video games always keep myself busy and i don't know what console you play - but Xbox One here (don't have Live unfortunately at this time).

By the way man, that Hogwarts Legacy rumor was all just a rumor - still debuting this year. Woot won't!

Sincerely,
HC

 

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@Honeeecombs Not really any better unfortunately. I've completely given up with my GP surgery. It's not all hopeless though. I've got a phone assessment with the Long Covid clinic and so via them I'm going to try to get referred to a specialist Chronic Fatigue clinic. I've got an MRI scan booked via neurology and have managed to get hospital transport for that. When that comes back negative (my last two were and I had a full body one done!) I'm going to push for a lumbar puncture to rule out Guillain-Barré. My urology appointment referral has also been chased up and given that one of the symptoms for G-B is urinary retention a bladder test will also help rule that out (or diagnose it but trying to stay optimistic!)

In terms of disabled sports, there is a powerchair football/soccer team somewhere on the trainline here so once I get a better chair that folds it is an option. Basically I need better housing or a better chair.

In terms of gaming, I've got an Xbox One S and a gaming laptop. Tend to use my laptop more now as it's higher spec than my Xbox and it's starting to show on newer games. The new Lego Star Wars is my most anticipated game of the year - played The Complete Saga a lot when it came out in 2007 as a way to destress through my GCSE exams.

 

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@Sci_Fi_Fan: Me too bro! I think I told you a while back I'm a huge Lego game and Star Wars fan.

I am pumped for Lego Star Wars: The Skywalker Sega. I have an Xbox One X (similar to the S, just with a disc drive I think) - but I'm really got high hopes for this new Star Wars game.

The graphics look solid, from what I hear the open world maps are going to be huge and to be able to go through all the chapters is going to be exciting.

Anyway, I've been playing alot of Lego Games these past few months. From Jurrasic Park and Lego City Undercover, I'm a huge casual gamer in my spare time.

I'm really hoping after Lego Star Wars The Skywalker Sega; they do the same treatment to Lego Harry Potter. Years 5-7 was well done; but 1-4 feels pretty dated in my opinion.

Also, is Guillian-Barre (I've heard of that year's ago) a chronic condition or does it go away? From what I remember it may make sense in regards to your chronic fatigue, idk.

Cheers,
HC

 

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I do hope your games turn out to be as amazing as you wish I promise you, the top topic at Activision Blizzard is how to make the games better for the players. The pandemic has definitely made games harder to make because the teams aren’t there together in the same room to brainstorm and the quality of the content has suffered for it.