Miscellaneous ramblings of NarcKiddo

[Chart]

NarcKiddo, I was touched and impressed by your ability to remain clear and objective all the while juggling six or seven flaming torches at once.
Well done and sending support.

[TheBigBlue]

Just sending support 

[NarcKiddo]

The cold finally went, the FOO visit was tolerable and the exercise test was valuable. I have yet to see the consultant to discuss the ongoing ramifications. The test has yielded results but not answers and it is becoming increasingly clear there is not going to be a simple fix. The medics may want to send me down all sorts of rabbit holes and I will need to think carefully about the benefits of that. They are making noises about heart issues (less likely) or neurological issues (more likely). I am keenly interested on an intellectual level to know precisely what is wrong with me. However my resources, financial, physical and mental, are finite. I don't think I can face a load more investigations unless there is a decent chance of them finding something that is fixable or, on the flip side, if there is a risk of there being some physical frailty that I must not push at. The most confounding result is that my aerobic fitness is in the lowest 5% of my demographic. How did that happen?

We have just got back from a long road trip to see friends and family. It went well but had plenty of stressors along the way. I was also able to collect data on some real world walking examples in places we gave been before, and where I last was just over a year ago. I did these walks a year ago and the experience of each one was noticeably worse than when I last did them, despite my being aware of the pace I must now adopt and using my walking poles which I was not using a year ago.

The most frustrating was a trip to a favourite shop of mine. We arrived at our hotel early enough for me to attempt the short walk into town to visit the shop. Back in the day it was a ten minute walk. I knew at my current pace it would be 20-25 minutes. I had 90 minutes, so plenty of time to get there and back and have a decent time to browse in the shop.

Well. I set off too fast. I did not think I was going too fast or I would not have done so but my watch records what I am doing so I could analyse it afterwards. The town was crowded and bustling with people walking at a normal brisk pace. Compared to them I was dead slow, but clearly not slow enough. I ended up walking at 2.8 kph (not mph, kph, so dead, dead slow) when I know my comfortable max is 2.5. By the time I got to the shop I was wobbly and tired. I was determined to browse so I went in. The escalator up was hard enough. Back down again was almost intolerable. There are a few small steps in the shop - they turned out to be a massive challenge too. I was looking at the racks of clothes mainly to rest without looking weird. I had no interest in anything. There were a couple of pairs of trousers I really liked and would have wanted to try on - but I simply did not have the capacity to do so. Eventually I admitted defeat and walked back to the hotel. By now I was so very wobbly that I was obliged to walk at 1.6kph and I felt terrible all the way back. My husband asked why I did not take a taxi back. The problem is that the city is highly pedestrianised and taxis cannot get into the heart of the shopping area. I would have had to walk further into town to get to the taxi rank - and of course there may not have been any taxis waiting. It was easier, if deeply unpleasant, to tolerate the walk back to the hotel.

A trip round a shopping mall the next day was far better. Everyone goes slow in a mall and I could go at a suitable pace. I had no deadlines, no mission, no obligations. I felt a bit wobbly at times but not enough to need a seat. There were plenty of seats if necessary. I was in the mall for 4 hours, although that included 2 coffee stops and a leisurely lunch. However, as I remarked to my consultant a while back, the cognitive cost of walking is immensely high. If I can manage my pace precisely, and my breathing mechanics to match, I can remain upright and have a vaguely pleasant shopping experience. But vaguely pleasant seems to be as good as it gets and I was exhausted afterwards.

Maybe a mobility scooter is in my future. I don't know. I don't object to one, particularly, but I do think walking is an important life skill. If I become resolutely sedentary it will not assist my health one bit. So I am very reluctant to go down that path. And I still exercise 6 days a week. Why can't I blithering well walk???!!!

[HannahOne]

NK, I read sharing your frustration that it can't be better figured out. Part of me wants to suggest they investigate your mitochondria, the energy factories of the cells. But it's all so complex and yes there are only so many medical rabbit holes one can go down, so other parts of me just sit with you on the stone steps of it all in a town where you would have liked to try on trousers, in some alternate universe where that was possible. I'm so sorry!

I do want to add that a mobility scooter might be helpful in conserving energy. I have a beloved who uses a scooter just in this way. There was concern initially that using the scooter would result in rapid loss of mobility, you don't use it you lose it, but in fact the opposite, using it enabled more activity because we were careful to use it consciously, for energy conservation, and to compensate for its use with structured strengthening exercises that had a bigger bang for the buck than just struggling to walk. My beloved actually gained strength and stamina this way because the exercises were targeted, vs just walking around exhausted. If that makes sense.

With you in the pickle of it all and wishing for smoother sailing soon.

[NarcKiddo]

Thank you, HannahOne. Particularly for your observations on the mobility scooter, which make a great deal of sense. Part of my reluctance to use a scooter (apart from cost, space etc, which are all possible to accommodate), part of me is very bothered about what other people might think. I don't look ill or frail. I look solid and able. I am actually strong - which has been objectively proved by all the tests I have recently undertaken. My aerobic capacity might be in the lowest 5% but my muscular strength is 200% of expected. I can walk around perfectly fine for short distances - once I get past 5 minutes of constant movement the problems can set in but I can usually rely on 10 minutes if I am careful. So I have visions of myself arriving at a shop in state on a scooter, and then rising, Lazarus-like, to walk around the shop. Imagining the chorus behind me of 'what a fraud'. Sigh. If a scooter is the right answer for me then I'll just have to suck it up.

 

[Marcine]

Hi NK,
I admire the clarity, dignity and determination that you're bringing to this complex situation.

I send my support during this challenging time and I encourage you to give to yourself, and continue taking care the best you can. I don't know how difficult this is for you (being gentle with myself has been a foreign skill I work hard to learn), but consider giving yourself something extra-nice each day, whatever that may be for you. Massage, soak, sit in sunbeam... ?

You deserve ease and soothingness. Especially in times of uncertainty.

 

 

[HannahOne]

NK, I had to laugh at your description, Lazarus like. That's actually just how my person uses theirs. Gets right up out of it and walks. No one has seemed to give it a second thought but if they did, you can always shout, "It's a miracle!!"

It's more a lot of annoying jokes like "I'm gonna give you a speeding ticket!" to which my person says, "Ho ho ho!"  or sometimes people say "I wish I had one of those," to which my person says, "Watch what you wish for!" Haha. That's not to say people don't judge or would never say something more aggressive but I encourage you to try it if you think it could help. It's hard when the disability is invisible.

[sanmagic7]

NK, unfortunately, people are going to judge us if that's their bent, pos. or neg.  i just want you to do what's important for you, and i say POO! on the rest of them!  you deserve to take care of yourself the best way for you.  and if that means Lazarus makes an appearance, so be it.  i say, if people are that bored w/ their lives, let me give them something to talk about.  i'm doing them a favor in the end!  lol!!!  love and hugs

[Blueberry]

NK, sending you a magic shield to put up against any such dumb remarks or dumb thoughts from others.

[zen_racer]

NK, I'm glad the test was valuable.  I have resonated with not getting answers in the past when I was struggling with my gallbladder that failed in a way that's barely recognized.  I like Hannah's description of using the mobility scooter with intention and being able to focus energy on specific exercises for more bang for your buck with the energy you can spend on it.

I can also relate to not wanting to have people thinking you're faking it.  That's how I felt when I had broken my ankle, but because of how it broke didn't have a cast.  It was immensely painful, but I refused to use one of the scooters at the grocery store because I'm sure everyone would've just seen me as a perfectly healthy adult using it for fun.  Wow, that brings back memories of how painful it was, but I felt trapped in a prison of my own making.

I commend your scientific approach and reasoning.

Sending warm thoughts and hugs. 

[Armee]

Aw NK that is all beyond frustrating and a little depressing to be so capable of hearty exercise but for this one important bit of not being able to get any oxygen!

I can very well respect your wishes to not go down every rabbit hole the medics want to push you down. Perhaps you and they can prioritize based on whether the finding of each rabbit hole may lead to some kind of treatment versus an answer with no solution. 

[NarcKiddo]

As always, thank you all. 

I don't know what to do. Well, I do, but I don't want to do it. Or maybe I do. Sorry. Let me explain.

The lung doctor has come to the conclusion the main problem is what I thought it was. Mechanically we know pretty much what is going on but we don't know how much is fixed and how much might be modifiable. Essentially there is not much to be done but it is not clear why it has fairly suddenly interfered with my exercise in such a drastic way. There are probably other factors, too, and he has referred me to the lung professor to talk about exercise protocols and see what other input the professor can make.

The lung doctor said it might be possible to improve the situation significantly with a medical procedure but he would have to refer me on to explore that. The procedure involves burning away bits of my lung tissue. It involves three separate appointments and will take up at least two months of my life, including making symptoms way worse before they (hopefully) improve. So that is not very appealing and might not even be a suitable procedure. We will see what the professor thinks.

Then the lung doctor said there was a pill I could try. It helps 33% of people, has tiresome side effects for 33% and is neutral for the final 33%. So that sounded like it was worth a try and he gave me a prescription for a month's trial. I have detailed and consistent exercise data so it is totally possible for me to prove objectively whether it does make a difference. I planned to try it around now. We go away on holiday in just over a month.

But...

When I started researching the drug I realised it came with a big black box warning about mental health effects. Lung consultant did not mention this because he does not know about my CPTSD. None of my medics do. It has not seemed relevant to my problems and I would rather not discuss it with them. The hospital where I go for many appointments has a questionnaire that asks about trauma and I have ticked that box. Nobody has ever asked me anything further so I conclude they are not really interested.

However, this warning specifically says I must tell the medics before using it if I have mental health problems. I must also stop taking it immediately if I get any of the mental side effects. The problem is that many of them are things that crop up for me anyway - so how will I know? The things I don't get, but might, are things I most certainly do not want. Sleep walking and hallucinations, anyone? No, didn't think so.

For now I can kick the can down the road a bit because I have realised the next month will not give the medication a fair trial. I am stressed leading up to a holiday. I am likely to be dysregulated anyway - so how will I know if that is just me or if it is the medication? My T is on holiday for a couple of weeks so she will not be around to help me untangle any of it. I have to have three lots of vaccinations and if they make me feel sluggish then that is several days of bad exercise data. So I am going to have to wait until I get back. That means I can have the talk to the professor and see if he thinks the medication is a good idea. I am prepared to try a medication with a 33% chance of improvement but he may say in my case it is less than that, in which case I am not too keen, especially with the black box warning. The chances of psychiatric side effects are low. It is the physical side effects that can affect 33% of people. The mental ones are less clear - I have seen figures ranging from 10% to 1%. The manufacturers say 1%.

However, if the professor thinks it is a worthwhile thing to try then I am going to have to tell my other medics about the CPTSD. Which I am reluctant to do. I talked it over with my T yesterday. I don't feel much better about the prospect. Parts of me have wanted to tell medics for quite some time and other parts are adamantly against it.

I did at least have the opportunity of flying SI past my T in the mildest possible way. One of the side effects of this drug is SI (or actually attempting). I read out the list to her, saying yes or no to all of the symptoms and when we got to SI I said 'this is something we have never talked about and probably should' and she paid instant close attention to that comment. But I moved swiftly on. I wondered if she would circle us round to that but she did not. There was not time and in any case I think she is waiting for me to bring it up again. We'll see. At least I have peeked open a corner of that box, which is a start. And she is probably letting me go at my own pace on this topic.

Ugh. I'm so dysregulated again from all of this.

[Bach]

 

[SteveM]

NK,
So sorry to hear of your struggles, sending hugs and prayers for some clarity as to the  direction you should head!
XO
Steve

[Hope67]

Hi NarcKiddo,
I am also sending you hugs of support through this   

I wondered if maybe saying something to the medics like 'I have a trauma-related condition that can affect my stress responses, so I need you to be aware of that when we're evaluating this medication' - that way a disclosure is not inviting them to view your whole history/issues, but it's flagging up that they need to be aware. 

You do have time - like you said - to wait until after your professor's input, until you're back from your holiday, and until your T is available again - so there's plenty of time to ensure you can consider many avenues.

Sending you hugs