I wish someone had warned me when I first got ME... therapies and treatments

[alex3619]

A million times yes! I was raised with that Protestant work ethic: just work harder.

http://forums.phoenixrising.me/index.php?entries/masks.680/

 

[Wonko]

Slow, or determined?

It took me a long time to realize I cannot control or beat this by myself. I was determined to keep trying, until I had that realization.

I thought it was implied by the context. I meant slow on the uptake (directly), with an suggestion of slow in it's old, possibly only British meaning, of slightly retarded (in that i don't see the bleedin obvious).

But, yes I've always had a tendency to be determined, if by that you mean not knowing when to quit, how to, or even that it's an option.

It's something I've had to learn about.

 

[JaimeS]

http://forums.phoenixrising.me/index.php?entries/masks.680/

This.

 

[CFS_for_19_years]

I wished that someone had told me that I could become worse after being sick for 20 years or so. Seven years ago I was able to walk 35min twice a day and swim occasionally. Now I'm mostly housebound and don't walk anywhere except to the bathroom and kitchen to microwave meals from Meals on Wheels. I just wasn't psychologically prepared to consider that I may become so much worse after doing OK for so long.

 

[JaimeS]

I just wasn't psychologically prepared to consider that I may become so much worse

Yes. This idea that you can make yourself permanently worse or become worse through environmental factors is not something the physician wants to say. I mean, then it could prevent us from exercising to our capacity, which as we all know is important beyond all other considerations.

 

[justy]

I wish someone had warned me that reading all you can, researching, having hope and fundraising to see a specialist who knows about M.E and trying to follow their advice could make you a lot more ill.

Every intervention, drug and Dr I have seen has left me worse off than before as I e believed in the notion that you 'must fight it' ' must never give up' and ' must always strive to get better'.

I wish I'd spent the money instead on restaurant meals while I could still eat them, an off road wheelchair while I could still enjoy going out, and traveling to see my kids and friends instead of my Dr, which was always too much and has meant I only saw my granddaughter once in a year.

 

[JaimeS]

I wish someone had warned me that reading all you can, researching, having hope and fundraising to see a specialist who knows about M.E and trying to follow their advice could make you a lot more ill.

Every intervention, drug and Dr I have seen has left me worse off than before as I e believed in the notion that you 'must fight it' ' must never give up' and ' must always strive to get better'.

I wish I'd spent the money instead on restaurant meals while I could still eat them, an off road wheelchair while I could still enjoy going out, and traveling to see my kids and friends instead of my Dr, which was always too much and has meant I only saw my granddaughter once in a year.

....wish the last set of emojs weren't smiling.

 

[Subtropical island]

I wish someone had warned me that reading all you can, researching, having hope and fundraising to see a specialist who knows about M.E and trying to follow their advice could make you a lot more ill.

Every intervention, drug and Dr I have seen has left me worse off than before as I e believed in the notion that you 'must fight it' ' must never give up' and ' must always strive to get better'.

I wish I'd spent the money instead on restaurant meals while I could still eat them, an off road wheelchair while I could still enjoy going out, and traveling to see my kids and friends instead of my Dr, which was always too much and has meant I only saw my granddaughter once in a year.

ETA: and what's great about this thread is that you just did: you warned me. Thank you. From the bottom of my heart

Thank you for saying this. I need it.
Am still moderate and slowly realising that searching for a CURE is a waste of energy but rationing the energy on what matters most is the answer. For me. Just now.
This is what I'm trying now. But recognising that this really is real, that it's happening had to come first.

I rope myself into doing things for others (editing a book, cooking meals for a tired husband, being there for people who don't really value it, attending medical emergencies and losing a month to recuperation) pacing like a religion to manage other people's requests, and I've forgotten to have fun. (Although some of these threads are a nice taster).
Next week I've booked myself into the best classic restaurant in town with a comprehensive explanation of what I can and can't have,
I've timetabled that next month I'll test drive a power-assist mountain bike (for places I'd normally just walk but are now past my limits),
the next month it'll be a double kayak (kayaking is a huge part of my husband's life - he used to commute in it, surf in it, run rivers in it... so even if I do nothing but sit we'll be fine),
I'm going to try zip-lining and see if thrill without exertion is ok for me.
Etc.
I'm going to revel in the freedom I currently have to sit up, to walk (not too much), to get out (within pacing limits and with a sleeper van to retreat to). Can't take it for granted.
Just one crazy fun thing a month or more is plenty. But I used to think you had to have terminal cancer to pursue a bucket list. Now I realise that the more I can look back on when I'm not doing so well the better. Just need to keep it within my limits.

Be selfish. Focus on what you need and what you want. Mix it up a bit.
Best thing for us, not easy advice to take.

ETA: 15 minutes still makes a memory. I'm not talking about half a day or even an hour out in a kayak or motorised mountain-bike, test drives are great in that they are free or cheap and not too long

 

[Invisible Woman]

I wished that someone had told me that I could become worse after being sick for 20 years or so.

Yeah. This really resonates with me.

I've heard it said that it's not the norm to get worse & so I stupidly assumed that I would stay at the level I was. Mistake.

Thank you for saying this. I feel less alone. Though I am sorry that you're in the same sorry state as me.

 

[alex3619]

I try to cultivate patience. I got worse some five+ years ago. I might, or might not, be showing signs of improving right now. However I do not put my hopes on that. I do what I can reasonably do, pace myself, and do things I like when I have the capacity.

I have a huge backlog of things I need to do. When I am having a rare good day I typically do one or some of them. This means I rarely get to go out, such as to the cinema, even when I have a tiny bit of energy. I am trying to work on that, and spend some of my rare energy on fun.

I think I have made it to the cinema three times in eleven years. Maybe four if you count the day I managed to get there to find everything closed due to it being a public holiday. Things would open later in the day, but my energy does not last that long.

Just a while back on coming home from a doc visit I passed a cinema. Guardians of the Galaxy 2 was playing. I would have had to wait hours, then see the show, and I was already crashing from doing too much. So I just grabbed a taxi home.

While we can get worse in the long run, we can also improve. Years of a downturn can lead to years of an upturn. Patience is a necessary thing if you have ME.

 

[JaimeS]

While we can get worse in the long run, we can also improve. Years of a downturn can lead to years of an upturn. Patience is a necessary thing if you have ME.

 

[CFS_for_19_years]

Be selfish. Focus on what you need and what you want. Mix it up a bit.
Best thing for us, not easy advice to take.

ETA: 15 minutes still makes a memory. I'm not talking about half a day or even an hour out in a kayak or motorised mountain-bike, test drives are great in that they are free or cheap and not too long

Sometimes when I'm lying in bed awake and don't have the strength to get up, all I have is the memories of things I did while I was still able to enjoy my life. I remember traveling, doing things with other people, the boyfriend in college I wish I would have married!

 

[Subtropical island]

@CFS_for_19_years

 

[arewenearlythereyet]

I am also mild moderate (gradual onset) and currently in a slight decline. I am looking at an uncertain future having lost my job and am worrying about not doing too much in case I decline further.

I wish someone would have told me to go on sick leave sooner...before I couldn't walk to the photocopier.

I wish the doctor hadn't spun the BS about "most people recover" (That advice is still on the NHS website) and told me straight that I probably wouldn't recover and that I put myself at risk of further decline if I don't pace and avoid PEM.

It's about management and vigilance as well as acceptance and patience.

After all that I think living each day and making tough choices on how you spend your energy is what it is for me. It just seems a rather lonely, selfish life sometimes. I can see why people sacrifice their future for living in the moment and over do it. Trick is to do that without overdoing it.

 

[Learner1]

That's interesting, because several other people found Holtorf to be a waste of time and money.

I know nothing about Holtorf other than his model attached here.

It struck me as a good model to work with as my doctors have identified and are treating significant problems in every single one of the boxes in his diagram and I am improving.

I don't know how Holtorf treats the boxes, but my doctors seem to know what to do...

- comprehensive hormone protocol
- comprehensive nutrient protocol
- mitochondrial membrane support and mito nutrient cocktail
- immunomodulators, IVIG, antivirals and antibiotics
- heparin
- detox and liver support
- intestinal support

It's a lot to manage, but I've made a lot of headway.

 

[IreneF]

I know nothing about Holtorf other than his model attached here.

It struck me as a good model to work with as my doctors have identified and are treating significant problems in every single one of the boxes in his diagram and I am improving.

I don't know how Holtorf treats the boxes, but my doctors seem to know what to do...

- comprehensive hormone protocol
- comprehensive nutrient protocol
- mitochondrial membrane support and mito nutrient cocktail
- immunomodulators, IVIG, antivirals and antibiotics
- heparin
- detox and liver support
- intestinal support

It's a lot to manage, but I've made a lot of headway.

You can do a search on Holtorf, see what people have said.

 

[Learner1]

You can do a search on Holtorf, see what people have said.

I don't really care what people say about him. This isn't about gossip.

I care about getting better. I have excellent doctors who are helping me do so. I was overwhelmed by the cascade of abnormal lab results and feeling like everything was broken, all at the same time. Holtorf's model allowed me to have some context to understand and carry out my treatment plan that my doctors have devised for me.

 

[IreneF]

I don't really care what people say about him. This isn't about gossip.

I care about getting better. I have excellent doctors who are helping me do so. I was overwhelmed by the cascade of abnormal lab results and feeling like everything was broken, all at the same time. Holtorf's model allowed me to have some context to understand and carry out my treatment plan that my doctors have devised for me.

People post their experiences. Sharing experiences is one of the purposes of this site. Like asking around for a good car mechanic.

 

[Learner1]

I gave my experiences.

 

[Mrs Sowester]

Thank you for giving your experiences @Learner1. That's what I hoped for this thread, members would post about treatment experiences so new members can learn from our mistakes and successes. Of course where one approach may have helped us, another person may have had a very different experience or want to sound a note of caution and for balance we need that in this thread too if we're going to help newbies (newMEs) make informed decisions.

I've just remembered another disaster, fluoxetine aka Prozac. I was high as a kite but didn't sleep more than 2 or 3 hours a night, lead to an almighty months long crash, impressive falls and spectacular bruising. I wonder what would have happened if I'd tried to gradually build up to the full dose? Who knows.
But I'm finding Mirtazapine to be much better for lifting my low mood, its helped me initiate sleep and reduced my need to wee 6 times a night to once.