Is it really worth the fight?

[Chrisb]

I was meant to go to an art class but it is in the evenings (end of road) and I am just so tired with the clock change. Perhaps I can talk to the lady running it and ask if I can come when able. That might be a good compromise. It's just I have spent SOOOO much money signing up for things and then cancelling. I just cancelled a course I was meant to be doing and lost a lot of money. I always love the sound of the courses but the reality is I am too sick to do them.

This is precisely why we all know the psychobabblers to be wrong and why we suspect that they have a very poor understanding of their subject.

One goes for years expecting to be able to achieve what one always used to do. And if one finally comes to terms with the fact that these things cannot now be achieved, one still grieves for the pursuits unpursued.

 

[digital dog]

I know this is a generalisation but depressed people do not necessarily want to do things...they see no point in doing courses, hobbies, sport etc. We on the other hand see all the wonder of life and want to be part of it but cannot. That is the fundamental difference I think.
The psychobabblers would probably say that subconsciously I didn't want to do those courses. That it was depression stopping me from doing them.
I have the odd day when I feel functional and I feel like taking on the world. I feel I could achieve anything.
Thats not depression.
Thank you for all your replies.

 

[skipskip30]

These are all sensible and rather lovely messages. Thank you all so very much.
I won't write much as I am too tired but just wanted to say that it is nice to know that I'm not alone.
I may actually get a cat (thank you Beaker for that suggestion) but responsibilities stress me out and Im not sure I am well enough to handle an animal. We had a dog but due to my health we had to re-home him (to the most wonderful home in the universe thankfully). I am very scared that it will be another thing I fail at.
How much work are cats? I LOVE animals but Im just not sure I could handle having one...another thing I grieve over.
I would like to meet other people with ME but I went to a support group here in the South West and no one turned up. When I lived in Australia the support group was excellent. A really positive experience. I need that now (dint need it so much then) but its so hard to meet anyone. I think, perhaps, Uk support groups can be a tad depressing.
SOC I am so glad you are doing better.
I am so lucky that I am not severe. I do know how lucky I am but life is still so disappointingly unfulfilling.
The world is so bloody beautiful and yet I cannot be a part of it.
:thumbdown:

I have two house cats and they are quite a lot of work to be honest, i often need help to take care of their needs. Outdoor cats would be far less work of course but it depends how well you are and how your finances are (they aren't cheap either!). Have you considered something smaller like a hamster or rat?

One other thing you could consider is talking to a local cat shelter about giving an elderly cat a home for the last few years of their life. They should be able to help with vets bills and possibly in other ways while you take care of a cat that would otherwise live out its days in a shelter. You would have more support this way and not need to expend energy playing with them as much.

 

[Raines]

Do I just exist? Is that what my life has become? An endurance test?

I wonder these things too sometimes, and I don't know.

I tell myself that better days will come, and I just have to keep going the best I can.

Today is a good day, I believe it, better days will come.

And on the bad days, i remember that those feelings pass and its ok to struggle.

Hope your having a better day, Lorraine

 

[digital dog]

Thank you Skip. Good to know that outdoor cats are easier. I am not well enough to get a cat at the moment. The responsibility would be too much. appreciate the info though.
Raines I am glad you had a better day. I so hope it continues.

 

[Andielyn]

@digital dog Thank you for putting your feelings and emotions out there so honestly. I have been sick for awhile but just recently diagnosed. I've had a feeling for several months that I had CFS/ME, and sick much longer than that, and truly hoping that this was not what I was up against. I'm terrified. Yet optimistic. Having found this group months ago was truly a gift. All our journeys are different yet there are so many common bonds. I had my first and only child when I was 25, who was shortly thereafter diagnosed with a life-threatening illness, and the road as a mother of a seriously ill child is difficult beyond belief, but I am a fierce fighter and would not give up, no way, no how. Not expected to live past 2, she just got engaged last week...she's 27. Yet I find all the weapons I learned to fight with--with the exception of knowledge/self-education--has no place in the CFS/ME world. What is good for her fight, makes us worse. And I never thought I would get sick. I am the caregiver, after all.

All the replies here have touched me. Yes, it is worth the fight. It has to be. I can't go down this road thinking anything short of that. I will (and have) allowed myself to face those difficult feelings--for me, as someone else said, it is healthy. Then I pull myself up and carry on. I used to golf, bike, hike, renovate a turn-of-the-century home, maintain 3+ acres of land, and so on. Now I am struggling to keep my job, on FMLA leave, and it's all I can do to get into work, and all I do outside of work is rest. But I have hope. We can do this, @digital dog You have been dealing with this much longer than me but hearing your honesty, seeing the support from others, and reading your replies and seeing a shift from down to encouraged gives me so much hope. Thank you. ~Andielyn

 

[digital dog]

Im so glad my post helped you Andielyn. To be honest it is just the tip of the iceberg in how I really feel. My grief with this illness would be hard to put on paper.
Im so sorry you are struggling.

 

[Andielyn]

Im so glad my post helped you Andielyn. To be honest it is just the tip of the iceberg in how I really feel. My grief with this illness would be hard to put on paper.
Im so sorry you are struggling.

And I am sorry you are struggling so much, too. I can relate to it being just the tip of the iceberg...I could never in a million words express the journey with my daughter.

 

[whodathunkit]

One other thing you could consider is talking to a local cat shelter about giving an elderly cat a home for the last few years of their life.

I was going to suggest this, too. Adult cats are not a whole lot of work. Mid-life or older cats are beyond the obnoxious teenage years where they tear stuff up, and most of them are content to sleep and keep you company. That's it.

Especially now with clumping litter and Litter Genie, you don't really have to do much more than scoop stuff out of the box once per day or every other day (depending upon your cat). You can get by with almost never dumping the box entirely and cleaning it out. You just scoop stuff and put it into a sealed container, which is very little effort. If you could get someone to come over and change the Litter Genie bag when it gets close to getting full (with one cat, that would probably take a couple months), that would probably overcome the most work of having a cat.

Edited to add: you do have to add new clumping litter to the box every so often, to keep the litter level up, but you can just pour it in on top of what's still in there. That's a bunch less work than dumping old litter, cleaning the box, and then putting in a whole box full of new litter.

Cats that are indoor/outdoor tend to be even less trouble. They prefer to do their duty outside, and then come inside for food, warmth, and companionship.

Honestly, I don't know how I would have gotten through everything without my kitties and puppies. Having that unconditional love has helped me through a whole lot of grief and despair. It's always helped me when I'm feeling crappy and overtired and isolated and then suddenly some furball comes and starts snuggling me just because I'm there and they love me. Or sometimes they're just hungry .

I've almost always had a menagerie which creates a lot more mess (one reason my house is such a disaster, since I couldn't really keep up with it for years), but I also know from experience that just one cat doesn't create much work at all. If Litter Genie had been around back in the day, my house might even be in better shape than it is now.

However, that's just my $0.0.2 based on my own experience. It's worth noting (as you probably already know), that there have been studies that show that pets can help in a lot of not only psychological but physical ways (creation of beneficial feel-good hormones, etc.). But you're the best judge of the reality of what you can do. Just throwing it out there as food for thought.

I hope you're feeling better!

 

[Mary]

@digital dog - A cat has been the perfect pet for me. They require hardly any work, just cleaning out the litter box as @whodathunkit said, and my cat has been incredibly patient when I haven't been able to keep it clean for several days because I was crashed. You don't have to walk or exercise them or anything. Just feed them and be their slave when they demand attention! They can be amusing too. How could I be at my computer without my cat walking on the keyboard trying to help me? I couldn't handle a pet that required any more work, but the cat is purrfect!

BTW, I often feel the same way as you, and think, I've tried everything, there is nothing else, basically no hope, and then something else comes along to try. Part of me believes our bodies are capable of healing, we just need to find out what it is. Because there are times - few and far between but still - where I will feel almost normal, and wonder, what is interfering with this. There's got to be a reason. If I could only find it ... actually right now am experimenting with B1 - thiamine of all things - and getting some interesting results. After 17 years of crashing and trying a zillion things, and now lowly B1 may be important. I'm not going to post about it yet, it's only been a few days, but here I was thinking there was nothing else to try, and now this.

You're most definitely not alone!

 

[digital dog]

I so hope that thiamine helps you.
I never give up trying things. I wish I could but the reality of giving up trying is giving up hope and that fils me with dread.
I just wish things didn't make me so much worse. It is such a risk for me to try things.
I can't stop though as I can't stomach the knowledge that this is my life.
Too depressing and scary.

 

[Gingergrrl]

@digital dog I want to believe that it is worth the fight but sometimes like tonight I just do not know. I apologize that I have not read through the whole thread in case anything I say is repetitive.

I see people with their "Bucket list" of things that they want to do such as "Climb Mount Everest or go sky diving" and my bucket list (truly) at this point is to eat without taking 6-7 meds multiple times a day to control histamine just to eat basic foods without the risk of anaphylaxis, to take a shower by myself, to go back to work, to cook a meal, to clean my apt, to walk outside without a wheelchair, to breathe normally without shortness of breath and chest pain, to go to dinner or a movie with my husband, to hang out with my friends, to shop at a grocery store, to drive a car, etc.

It's literally that the life that I used to have and complained about is the exact life that I want back.

 

[Gingergrrl]

I never give up trying things. I wish I could but the reality of giving up trying is giving up hope and that fils me with dread.
I just wish things didn't make me so much worse. It is such a risk for me to try things.
I can't stop though as I can't stomach the knowledge that this is my life.

I feel the exact same way and have been on a new treatment plan for 18 days (slowly adding in different components) and right now it is making me feel incredibly sick so we are having to slow it down and I am not tolerating some of the components, etc. I am still guardedly optimistic and really appreciate your words and relate so much. As long as I feel that there is something more to try, I do not fully give up hope.

 

[Raines]

I just wish things didn't make me so much worse. It is such a risk for me to try things.
I can't stop though as I can't stomach the knowledge that this is my life.
Too depressing and scary.

I understand.

Today I got a benefit form to fill in, it will takes me weeks. I hate the form, being totally honest and frank about my small limited life is unbelievably depressing. (This forum is one of the few places where people understand how awful that type of thing is)

My health is worse than the last time I filled it in, and I have to tell them that so they can judge me.

It's like they don't know or don't care about the emotional impact of being truly honest about my illness and its downwards trend and just how bad things are.

I have some hope, but today it's very small, and feels fake and forced.

@Gingergrrl your bucket list made me think. I'd like a good night's sleep, to fall asleep quickly and comfortably, to have a good dream (or no dream), and to wake feeling refreshed and ready to face the day. And sadly I think that's as likely as me climbing a mountain or running a marathon

 

[digital dog]

Today is my birthday and all I wanted was some stability in my health.
No such luck.
Couldnt sleep at all with buzzing and heart pounding so had to take as sleeping pill and now feel like death.
The last two birthdays were a descent into hell and I so wanted this one to be different.
No one knows it is my birthday as I cannot handle the intervention but now all I have is three cards from family and a day in bed crying over the last miserable year and the raw agony of sleep deprivation.
I have actually decided this morning to stop trying things that have potential to harm. I had DHEA all cut up and ready to take today but something in me has switched. I am bad but can go so much lower and mentally I cannot handle that.
There really is no point in me trying things. I get worse..never better and I don't think I am going to continue searching for a holy grail which may not exist (for me, for others I imagine it may well do).
My life scares me. I derive no joy, no pleasure from it and only pain. How is one meant to live in that state?
I wish I could take antidepressants to dull the agony but they make me very sick so they are out of the question.
My bucket list is to have some consistency. To be able to plan simple things. To be the person I am not the person I have to be. For my husband and child to know ME not the person I have to be due to health. They've never even known me as I met my other half when ill. They do not know the creative, vibrant, optimistic, energetic, competent, successful, soulful person underneath. I wonder if they ever will?
All morning I have been tossing and turning trying to work out what could have brought on this insomnia. Was it the salt on the chicken, was it the sugar I ate, is it due to ovulation, is it due to the pill I took a fortnight ago, could it be the epsom salt bath I had last night due to the pain I was in????
Sometimes I feel I shall go mad trying to get to the bottom of this condition.
Today I think I am ill. I will always be ill and there is nothing I can do about it. You just have to endure life until theres a time to escape it.
Happy Birthday to me!

 

[digital dog]

Im sorry raines and ginger girl. Im sorry for us all.

 

[Raines]

Im sorry raines and ginger girl. Im sorry for us all.

I'm sorry too, and, for what it's worth, happy birthday digital dog.

 

[whodathunkit]

Couldnt sleep at all with buzzing and heart pounding

This is ALWAYS a signal that my hormones are acting up, and it usually happens mid-cycle (right before ovulation) and at the very end of the cycle (right before I start to flow). I feel like I have electricity running through my whole body. ZzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzAAAAAAPPPPPPP!!!! Zzzzzzzzzzzzzzzzzzzzzz...

And the vibration, too, that's not just from the pounding heart. Although at times my heart has pounded so hard it seems to shake the bed.

I just had an episode last week, in fact. Several nights of it (thankfully better now). I HATE IT.

My money's on ovulation as the primary culprit, although other things can predispose your body to be out of hormonal whack. I suspect my prolonged episiode last week was due to a little experiment with niacin that I had been conducting on myself. Turns out it messed me up quite a bit, although the delayed effects are only incrementally becoming apparent, and it's taking a while to get over it.

How's your diet, @digital dog? Have you looked into a Perfect Health Diet kind of strategy, with primarily saturated fats and good starch as your staples? Diet is the foundation of everything, especially hormonal health, and this eating style has helped me tremendously.

IMO diet is the easiest, least expensive strategy to start off on the road that could potentially lead to recovery. And even if you never reach the goal of recovery, any improvement is beneficial.

P.S. Happy Birthday! I hope it's a gotten little better.

 

[Gingergrrl]

Happy Birthday @digital dog! I thought and was very tempted to create a b-day thread for you (now that I know) but was not sure if you wanted one? Hope you find some moments of peace today.

 

[digital dog]

Thank you for your kind words. I got through the day...another one accomplished.
I feel a little better this evening due to reading more about rituximab. I feel that even if it doesn't help me it will change people's perceptions of this illness. I would like to think that people who get better with ritubamix will bombard the media and get this nonsense sorted out.
I can't wait to read articles about how it is NOT all in the mind. I think I will wallpaper my house in them!
Sometimes the agony of people not believing me is as difficult as the physical torment.

Whodunnit I am very interested to hear that you get buzzing during ovulation. I can have insomnia at any time but it nearly always falls on my ovulation phase. I feel better but can't sleep. Full on injected with adrenaline can't sleep! Is this common? Mine is just before or during ovulation for 1-4 days and sometimes (not always) before my period.

My diet is good. Very good although could be better. I can't eat perfectly as I get insomnia when I cut out sugar completely. It's madness but I've tried again and again and again.

X