Life!

[Hitman3161]

Dear All,

I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness.

Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated.

 

My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need.

Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education.

I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS.

Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'.

My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'.

 

He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function?

I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time.

My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have...

I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..."

Afterall, ignorance is always the true killer.

Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.

 

 

[Hitman3161]

I'm provided with a home, food, and clothing. I'm very fortunate of that and l know there are others in a far worse situation... but beyond that I'm entirely dysfunctional and soldering on in a half brain dead zombie state, when I'm capable of so much more...

Life eyy... can be such a funny thing.

Edited July 27, 2017 by Hitman3161

[MomWithOCDSon]

Hitman --

I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported.  You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources.  It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally."

I can say, "Hang in there!"  I can say, things WILL get better.  But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality.

I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find.  I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress?  I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out:

• OTC anti-inflammatories, like ibuprofen
• vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc.
• an anti-inflammatory diet
• probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters
• weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK)
• exercise and/or meditation
• therapy

I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality.  Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy.  All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. 

There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy.  But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness:  reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening?  Reclaim little pieces of your life, if you can, however small.  And then celebrate that return to some functionality, however brief or small a glimpse.  That'll give you something to build onto.

And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment.

I know it's a lot to ask of yourself.  Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents.  But he still had demands made upon him, and we still set some expectations.  Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents.  We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself.  Not fair.  Far from easy.  But you can do it!  I know you can!

Wishing you all the best, and a giant, fighting spirit!

[Hitman3161]

4 minutes ago, MomWithOCDSon said:

Hitman --

I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported.  You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources.  It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally."

I can say, "Hang in there!"  I can say, things WILL get better.  But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality.

I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find.  I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress?  I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out:

• OTC anti-inflammatories, like ibuprofen
• vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc.
• an anti-inflammatory diet
• probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters
• weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK)
• exercise and/or meditation
• therapy

I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality.  Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy.  All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. 

There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy.  But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness:  reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening?  Reclaim little pieces of your life, if you can, however small.  And then celebrate that return to some functionality, however brief or small a glimpse.  That'll give you something to build onto.

And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment.

I know it's a lot to ask of yourself.  Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents.  But he still had demands made upon him, and we still set some expectations.  Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents.  We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself.  Not fair.  Far from easy.  But you can do it!  I know you can!

Wishing you all the best, and a giant, fighting spirit!

Thank you so much for being so informative in sharing your knowledge, experience and wisdom. Of course, reclaiming those small pieces of my life will be a gradual process dependent upon regaining some cognitive control and finding symptomatic remission.

These last few months have truly been the hardest, walking around in a total daze! Inattentive to every matter, and effectively unable to retrieve or store any information in my short term memory. I can't tell you how many times I've walked out the grocer leaving my wallet on the counter! 😅 Or even hold a conversation.

Thanks for your suggestions regarding dietiery and supplementary aids - I am also very interested in the glutamate transmitter, as in conjunction with OCD I also experience chronic depersonalisation, which I believe has it's etiology related to an inbalance in glutamate receptor cell activation within specific brain regions (in this regard it would be interesting to know how DPD relates to OCD!)

I'm only now just starting to regain my appetite, before this I was living on next to nothing, so I'll be sure to take your advise on board.

Other than that I'm awaiting ENT for possible T&A and sinus drainage, and of course my hope in immunotherapy...

Anyhow, thanks once again! you truly are an invaluable asset to the board

[MomWithOCDSon]

Hitman --

In our DS's case, we found that glutamate dysregulation was definitely a culprit; not sure, frankly, whether it was a side effect of the immune dysfunction/PANDAs, or if it's more directly tied to DS's genetic code, methylation function, etc.  At any rate, the NAC, which is readily accessible and inexpensive here in the States, made a big difference for him.  It is also thought to be a "biofilm buster," so we credit it with also helping DS and the abx regimen to clear up lingering illness and inflammation in his sinuses.  Prior to PANDAS treatment, DS had had constant upper respiratory and breathing issues, but the combination of the abx, NAC and histamine regulation at points, as well (during allergy season, during high stress) seems to have set all of that right on a more sustainable and permanent basis.

Re. short term memory loss, we saw that also, and just hold onto the fact that it WILL resolve as your health returns.  In fact, at one point, our DS said he sometimes felt like his grandpa, who suffered from Alzheimer's and couldn't hold on to a memory for more than a few seconds toward the end.  DS was bewildered by how he couldn't remember if he'd brushed his teeth 10 minutes ago, but he could remember the vacation we took when he was 5 years old.  Two supplements that are possibly helpful for that:  taurine and zinc.

In our experience, it takes longer and consistent application for the impacts of dietary supplementation to take root and be palpable, but they DO help!

Glad to hear a little more positivity in your "voice" today and sending you cyber-strength and support!  Do something you enjoy today, no matter what!