How to live after giving up fighting?

[neweimear]

I am sorry, you've been ill a little over a year and have a family, of course you'd think that.

However it may not be what people who've been ill for decades think. I think constantly hoping things will improve, that I'll get better etc. stopped me from dealing with things as they are, as they need to be dealt with.

Some of us are alone, and have been ill for a very long time, of course I have a different viewpoint to you - it doesn't mean that my advice to another person who has also been ill a very long time is bad, it just means we (you and I) have a different perspective.

Sorry Wonko, I did not see all your answer, I just read the first line about me being sick for a year. I know I have no idea what it is like to be sick for so very long. I find it hopeless alot of the time and I am only a year in. But for me, hope is important. But I agree, living in the here and now is very important too.

 

[Jasper80]

I'm very greatful and touched about all your responses. Your words honestly helped me and calmed me down a bit.

I'm very sorry for all who suffer so much and I know how exhausting it is to chase after every bit of health and normality. Day after day. But this little bit of hope will always be there, even if it is very tiny now.

Our body responses very sensitive about stress and the constant fighting is stress pure. So I'll try to let it go for a while. I need a break. (Which doesn't mean I'm not posting or searching).

Thank you very much. Wonderful forum and people

 

[Wonko]

Sorry Wonko, I did not see all your answer, I just read the first line about me being sick for a year. I know I have no idea what it is like to be sick for so very long. I find it hopeless alot of the time and I am only a year in. But for me, hope is important. But I agree, living in the here and now is very important too.

Definitely my fault, I expanded my original answer when I noticed it looked stark - and possibly creepy

 

[neweimear]

That is the reality people like myself and Jasper are facing. Yes, we need to learn how to be ok with that.

I

I'm very greatful and touched about all your responses. Your words honestly helped me and calmed me down a bit.

I'm very sorry for all who suffer so much and I know how exhausting it is to chase after every bit of health and normality. Day after day. But this little bit of hope will always be there, even if it is very tiny now.

Our body responses very sensitive about stress and the constant fighting is stress pure. So I'll try to let it go for a while. I need a break. (Which doesn't mean I'm not posting or searching).

Thank you very much. Wonderful forum and people

I think that is the best approach, I need to apply it myself. Let go a little and calm down, live in the now.....research wise, now is a time of hope, however small, its there

 

[Snowdrop]

.research wise, now is a time of hope, however small, its there

I don't think that treatment coming out of the research going on is a small hope. I think it is very likely that there may be some good treatments in the next decade. For the newly diagnosed there is real hope (dependent on other factors) So that is an upside.

Though it won't matter for some of us it is too late. Even if there was a treatment tomorrow by the time it got through the pipeline down to my country/province and it' s health system and the fact that I can't get out . . . truly some of us are realising that ship has likely sailed.

 

[neweimear]

I don't think that treatment coming out of the research going on is a small hope. I think it is very likely that there may be some good treatments in the next decade. For the newly diagnosed there is real hope (dependent on other factors) So that is an upside.

Though it won't matter for some of us it is too late. Even if there was a treatment tomorrow by the time it got through the pipeline down to my country/province and it' s health system and the fact that I can't get out . . . truly some of us are realising that ship has likely sailed.

Gosh Snowdrop it is very sad, so sad if the ship has sailed but on the other hand, none of us know what is around the corner. I suppose making peace with it all is key to some bit of happiness. But that is a very very tough thing to do.

 

[Snowdrop]

Gosh Snowdrop it is very sad, so sad if the ship has sailed but on the other hand, none of us know what is around the corner. I suppose making peace with it all is key to some bit of happiness. But that is a very very tough thing to do.

Yes, I move toward acceptance kicking and screaming. Though with the exception of discussing it here now and then mostly I distract myself from thinking about it. Appreciate the kind words.

 

[neweimear]

Yes, I move toward acceptance kicking and screaming. Though with the exception of discussing it here now and then mostly I distract myself from thinking about it. Appreciate the kind words.

How do you distract yourself? I spend most of day on couch and do a 5 min walk at some stage. I am always glued to my phone looking for updates and answers, then I get upset, cry a while. I have no distractions, if I gave up phone, I dont know what I would do. I try knitting but tire easily, reading and I get all foggy but I can read a bit. Interested to know of any helpful distractions? I also play piano but again only for so long.

 

[Snowdrop]

How do you distract yourself? I spend most of day on couch and do a 5 min walk at some stage. I am always glued to my phone looking for updates and answers, then I get upset, cry a while. I have no distractions, if I gave up phone, I dont know what I would do. I try knitting but tire easily, reading and I get all foggy but I can read a bit. Interested to know of any helpful distractions? I also play piano but again only for so long.

I used to love to knit. I can't bring myself to part yet with my many needles and supplies but I have carpal tunnel in my right arm and Fibro and yes the brain fog prevents easily following a pattern.

But to answer. I'm a cathartic tv watcher. Any show where the bad guy is caught, justice is done or ummm, sometimes carried a little too far (it's not real after all). But I'm squeamish about violence ironically so I stream shows and I can skip over scenes that test my limits and just enjoy the other stuff with the generally not happy ending but at least satisfying conclusion. I used to read murder mystery novels of the 'cozy' variety mostly but haven't in a while. I should try so again. I get so engrossed though and inevitably go over my limit for functioning but always enjoy the read. One series I might recommend if I may is the Tenzin Norbu myteries (Tibet meets Los Angeles) or for a uniquely Canadian experience Louise Penny's Inspector Gamache series.

I also sleep longer than normal so my day is shorter. There are small chores that I break up and do throughout most days or sometimes I go out on the back deck if not too hot or cold (although I'll tolerate 0 degrees celsius much better than say 25 (sorry don't know the Fahrenheit) I was recently gifted a lounge chair so I can lay down rather than sit in a camp chair. I do get bored just doing that after a bit but it's a nice break.

 

[Wonko]

Cognitive impairment has an upside lol - time exists, by and large, from moment to moment, memory doesn't, apart from in the most superficial and unconnected way. Even old memories from before I got ill have mainly gone, I'm just me, now, with added ME.

I have a cat, an old demanding cat.

Every now and then I'll decide, out of the blue, that I must have something, researching with no memory can take a fair amount of time - the most recent example was a heart rate monitor.

Life, when most things, most of the time, are a struggle, the absolute basics take a lot of time and mental resources.

External things, like, currently, the DWP, or hospital appointments, take more resources than I have available, so something else essential needs to be dropped to handle them.

With the resources I have available there simply isn't time to lie/sit thinking about things which aren't productive - all that has to go - and, mainly, it has.

Sometimes it's an issue, it's still possible i'm human, but when that happens I have fallback distractions.

And when I am more functional, as I have been for a few weeks up until yesterday, there is so much backlog the only distraction I need is how to organise things so I don't break myself - apparently I'm not so good at that


edit...oh yeah - I also have a 10TB NAS (networked hard disc - a distraction project from a couple of years ago) full of tv shows from the 1950's to present, and some films etc - that isn't used as much as it used to be but possibly accounts for an hour or so some days.

 

[neweimear]

Thanks Snowdrop. I will try some tv, a few box sets might be good. I have 3 kids too, they are at school during the day so its those hours I tend to let my mind run away thinking the worst. Today, I had an imaginary conversation with my mp who I hope to meet in the coming weeks, I was in bits!! If there was ever a camcorder on me, my sanity would be questioned. Too much time alone, yet we need loads of time alone to cope with the illness.
I have to say through all this one man keeps me going, Ron Davis. He wants to help all patients so much. He is a hero for all of us.

 

[Snowdrop]

Thanks Snowdrop. I will try some tv, a few box sets might be good. I have 3 kids too, they are at school during the day so its those hours I tend to let my mind run away thinking the worst. Today, I had an imaginary conversation with my mp who I hope to meet in the coming weeks, I was in bits!! If there was ever a camcorder on me, my sanity would be questioned. Too much time alone, yet we need loads of time alone to cope with the illness.
I have to say through all this one man keeps me going, Ron Davis. He wants to help all patients so much. He is a hero for all of us.

Understand and agree. I've had some really quite animated conversations with people who weren't there too.

 

[CFS_for_19_years]

How do you distract yourself? I spend most of day on couch and do a 5 min walk at some stage. I am always glued to my phone looking for updates and answers, then I get upset, cry a while. I have no distractions, if I gave up phone, I dont know what I would do. I try knitting but tire easily, reading and I get all foggy but I can read a bit. Interested to know of any helpful distractions? I also play piano but again only for so long.

See existing threads on how to distract oneself:
http://forums.phoenixrising.me/index.php?threads/hobbies.21461/
http://forums.phoenixrising.me/index.php?threads/hobbies-anyone.418/
http://forums.phoenixrising.me/inde...ting-fun-websites-for-when-youre-bored.50873/
http://forums.phoenixrising.me/index.php?threads/cfs-friendly-hobbies.51630/

There are also these threads that members add to on a daily basis, which can be quite entertaining:
http://forums.phoenixrising.me/index.php?threads/joke-of-the-day.574/
http://forums.phoenixrising.me/index.php?threads/cats-for-cat-bores-who-need-an-outlet.30426/
http://forums.phoenixrising.me/index.php?threads/birds-for-bird-bores-who-need-an-outlet.34637/
http://forums.phoenixrising.me/index.php?threads/dogs-for-dog-bores-who-need-an-outlet.34155/
http://forums.phoenixrising.me/index.php?threads/classic-m-e-moments.26157/
http://forums.phoenixrising.me/inde...irdest-thing-a-doctor-ever-said-to-you.39282/

I really like this website that Luther Blisset suggested: www.mapcrunch.com. Here are some instructions he posted about using it as a game:
http://forums.phoenixrising.me/inde...e-open-topic-thread.52195/page-16#post-880503
Me, I just like to poke around and see where I land!

 

[Valentijn]

People like me would never tolerate Rituximab or any other drug.

@Gingergrrl had a lot of severe intolerances similar to yours, but has been tolerating Rituximab thus far. There's hope!

 

[justy]

@Gingergrrl had a lot of severe intolerances similar to yours, but has been tolerating Rituximab thus far. There's hope!

Thanks, I know she has - she also has VERY through Drs in the US and does tolerate steroids which she gets before every dose of IVIG and I think Rituximab, which I don't tolerate at all. I really wouldn't want to put myself in the hands of an NHS consultant - they know absolutely nothing about MCAS.

 

[Gingergrrl]

and does tolerate steroids which she gets before every dose of IVIG and I think Rituximab

I actually do not tolerate steroids whatsoever (they cause me tachycardia, agitation, insomnia, and even once got a staph infection from a steroid) so I do not have ANY steroids prior to IVIG or Rituximab. I just wanted to clarify that b/c I wouldn't want anyone to think that steroids are mandatory (at least in the U.S.) The pre-med that I had for Rituximab was IV Benadryl (plus Pepcid & Tylenol) and for IVIG (Gamunex) I take my own pre-med which is Atarax.

Edit: Apologies that I did not read the whole thread and am only replying to the piece that Val tagged me about steroids.

 

[ktred]

Jasper,
I think the most distressing aspect of dealing with a prolonged illness that spans decades is the social isolation and corresponding loneliness. Please don't give up because we need each other. Knowing that you can make through another day helps me to do the same.

Simply knowing that there are other people dealing with this overwhelming experience lightens the burden I often feel. No one in my world knows what this feels like nor would they be able to understand how it has altered the course of my life. If I hadn't been down this path, I wouldn't understand it either.
I can function well enough to work, but often that's all I do. It's often painful that I can't be an exemplarily mother, wife, friend or family member.

With most illnesses, there's usually some respite here and there that brings us some joy. Making it through another day allows us to have those moments. Sometimes those moments have brought me clarity that was very useful.

Don't give up because we need you in our tribe.

 

[Jasper80]

Hello,

may I ask you something, because I have no one to talk about this hard topic and I would like to have some feedback or just some words for me to think about.

My case is really tough and there is no help in sight at all. Like I wrote I‘m struggeling my whole life and so many mistakes have been made. Now I‘m 37 and actually a wrack. My body is screaming for energy (my brain and adrenals are going nuts), but I have now chance at all to get the desired minimum. I don‘t tolerate any food. The reasons are various. My gut will not heal and my mastcells go nuts. And now after that long period I cannot go on with this fight every day. There is just no Energie and no hope left now. Just pure fear very minute of the day.

Now there is just the one way out, which is final. It‘s not that I don‘t like the life at all, it I really can not go on like this. Impossible.

If you have a dog and he is so sick you bring him peace and everybody is sad, but it‘s „ok“. Why am I forced to make so hard decisions, hurting everyone without energy and without guild for this mess? I‘m sorry if this sounds confuse, but It‘s very hard to solve mentally.

I‘m quite sure, that I will not get good again and I need to get out of this torture. I don‘t know what precise question to ask. Maybe some of you know what I mean. I would love to have my Disney way out,which is not possible, but is there at least a little Disney possible at the end?

Thank you for reading and I wish you all the best

It‘s not about how, it‘s more about how to get peace with such a decision, while one loves the family, but has no choice. Sorry if I wrote something that isn‘t allowed or is unapropriate.

Jasper

 

[ktred]

I'm so sorry that you're dealing with this. I honestly believe that you're not in an impossible situation. Your brain works well enough that you can write something coherent and that is a sign of something good. I've had long periods of time where I couldn't do that. Sometimes you need something that helps you get you to a problem solving point. I've benefited from things like listening to podcasts that had a positive and somewhat spiritual viewpoint. Podcasts and audiobooks are good when you're too tired to read. Look for hope any and everywhere you can. Once you can latch on to a glimmer of hope it's easier to find the resources to problem solve. Please don't give up!

 

[ktred]

Hi Jasper 80. Just checking in with you to see how you're doing.