Age 70+...How’s Your CFS?

[Stretched]

Most of the posts seem to come from young people or those certainly not much past middle age. I’m interested in hearing from other senior PWCs who may be lurking about and how they handle their CFS and related lifestyle changes in seriously getting older with a nebulous illness.

How do you handle your CFS concerns? Do you get out much or are you otherwise housebound and do you feel severely isolated? How about social involvement like work and friends; are they gone? Are you concerned about life moving away too fast, maybe out of control? Do you have sleep problems and or anxiety and depression? How about exercise or are you out of shape and frustrated due to CFS and PEM Restraints? There are other similar issues which seem to pile on now more than in any earlier years.

Personally, I’ve been involved in all of the above after ~30 years with this illness. I felt like this time of life, the 70’s was like a major life phase change, e.g. a milestone similar to reaching age 21 or age 50, only let down because of the demands of this illness. Lots of things that I once took for granted are areas of more concern and uncertainty - all enmeshed with the troubles caused by CFS. What’s to be of the future?

 

[Wolfcub]

I am sorry @Stretched . Growing older has its own challenges and ME doesn't make that any easier.
I have often thought of the old and alone with this illness. Yet even when someone is with a partner, husband/wife, and has a family....I don't know if those things make it easier or harder.

In a way it's easier because there's someone to help out (maybe) with jobs about the place, grocery shopping etc. But for those who have ME and their spouse or partner is also not too well, or maybe even needs care...then that is an awful fix.

I am 65 and a half and came down with this last March, from feeling very well and fit before, as I had been most of my life. At 64 I felt like someone maybe about 45-50. Now this year feel like someone of 80s. Or 70s on a good day.
Old aches (weak lower back) that I'd had for years are suddenly much worse too.

My avatar picture is from 2012. That's only 6 and a bit years ago. That's how I looked (and felt) age 59.

I live alone in the countryside, since my husband died, and my dog went. That lifestyle is demanding but I (at this stage) can manage to keep up with it so long as I pace myself very strictly. That means thinking way ahead for some things.

I have more or less adapted by now. I get my shopping online because stores have started to freak me out and drain every last drop of precious energy out of me.
I have a fairly mild form of ME right now....that means I get "funny turns" and symptoms on a remtting-relapsing basis, plus a great exhaustion. But I can go outside, and take walks. Some days are better than others.
Brain fog....not too bad, but have another indescribable thing (mental/emotional) where I honestly feel cut off from my Soul on some days. That is a cold unpleasant feeling, and I am not accustomed to that.
And I feel very fragile when I wake up in the morning. I find it hard to "come back to Earth" for at least 2 hours. And to focus on anything heart-felt or that is dear to me. Sometimes awfully shaky as if muscles are pushed to their limits (tried to balance on one foot and it's now hard to do!)
Take showers every OTHER day and hate doing them. I used to have one every morning.

I work through that and try to be gentle with myself. I am adapting okay I think, just sometimes things can freak me out slightly....

 

[Hufsamor]

I might write on behalf of my mother?
She has never been bedbound. Or even housebound. So those things might not fit your situation..

Anxiety: where we live, they have a psychiatric hospital/ doctors with elders as speciality. The ordinary doctor has to give reference. my mother has had some anxiety for many years, but as she grew older and got more other medications, she needed to replace her anxiety medication. But the new medication seems to work good enough for her to have a anxiety level she can coop.

Social involvement: my mother lives very central. And she has some social anxiety. So for her, it's kind if important to keep people at a distance. At the same time, she needs to know her neighbors are home, as she's rather afraid of the dark.
She try's to find a middle way. To invite a neighbor a couple of times a year, picking the ones that are not to social, so she doesn't have to be afraid it's going to be to much. She writes letters to old friends and family from time to time. Maybe a phone call every now and then.

Exercise: She has some exercises she does every day. Like: lay in bed. Turn your feets in circles 3 times to the left, 3 times to the right. That kind of exercises. She has a regular program with 3-5 exercises.
Most days she's able to go out. She might go around the house. Or she might go to the mailbox. She might go to the stores (for her, maybe 5 min slow walk), by an ice cream, and sits down to eat it before she heads home.

She gets home care for medicine and cleaning.
We order groceries online, door delivery.

She has told me she feels her life is more easy now, than when she had teenagers and everybody around her in her age was healthy and vigorous. And also later when my father had cancer.
Now, she's only looking after herself.
She gets help.
Many in her age are as sick or worse than her.

I've seen in this forum that some of the elderly are living in the countryside.
And feeling very good about that.

For my mother, I think it is important to live central, with the benefits that brings.

So for me, I'm soon 50, I'm thinking about it...where do I want to live if my husband dies and I'm closing up to 70?

Hmm I'm not sure this was helpful at all?

If I should point on the most important issue:
For those struggling with anxiety or depression, try out medication.
And if the first one you try doesn't fit you, try another.
Right medication, to get a liveable anxiety if possible, might be the difference between living nightmare and a life worth living.

All the best

 

[Stretched]

@Wolfcub. It sounds like you have your plate full but you also sound like you’re under control with a lot of equanimity. I can appreciate the very things you described and have experienced nearly each one to some degree. I can’t imagine going this alone and I empathize with you and admire your strength and fortitude.

Having been 65 some 8 years ago I can say there’s a difference in feelings and physical demands for me. I then felt a lot more full of energy but with the extra years gone by some of that get up and go has gotten up and gone,-). Everything is harder and psychological affects wear heavier than earlier. It’s gotten easier to procrastinate tasks
which need doing. I still go for short walks and get out to eat and I’m determined to get back in better shape, doing some exercising albeit non-aerobic which is a real no-no because of PEM.

My biggest concern is isolation. It’s hard to have friends when conversation causes crashes so I’ve avoided any social engagements to the point of being mostly solitary. I shouldn’t complain since I have a great supportive partner but aloneness for too long, like lack of sleep makes everything else more trying. I’ve got to work on this.

I don’t try to treat CFS per se but do treat symptoms with rxs and supplements since doctors aren’t very tuned in, understandibly. It’s like putting patches on a water balloon - get one thing under control then another needs tending.

I hope your adjustments keep sailing along smoothly and you remain positive and even tempered. Take care.

 

[Stretched]

@Hufsamor. I appreciate your thoughts and kind wishes. FWIW, I don’t really see myself as elderly despite my age. My profile is a cross between Clint Eastwood
and Eric Clapton. In fact, I think Clapton and I are the same age. I ‘m retired successfully and well educated to boot. I didn’t mean to sound pleading. Rather, I was looking for perspective from others in my age group who are otherwise upbeat and involved in life but are tied down or limited because of this damned illness. I’m actually pretty vigorous and was even more achievement oriented in my earlier years.

IAE, thanks for the offerings.

 

[Hufsamor]

Ah, sorry

Of course, you sounds exactly like I believe clint'ern (Clint Eastwood) would sound if he should write your post
(But I'm foreigner, you see, so often I miss out a lot of what you guys writes, or I m expressing myself rather clumsy sometimes. )

By the way, all the sudden i "understood " your avatar name and picture, love it

 

[DoggerFisher]

I'm 48 going on 140. My best (only) friend is 92. I have more in common with her than people my own age . Sometimes I think one of the few things the illness has given me is a head start on old age and what a horrible shock it's going to be for the rest of them.

 

[Wayne]

I don’t really see myself as elderly despite my age.

I once heard a defintion of "old" as being10 years older than we are at the present. So that just might explain why you don't feel elderly--and may never experience it. I myself often feel old (ancient even), and have looked at myself in the mirror over the decades of having CFS and wondered who that young looking man was. These days at 66, I look more the part. But even though I often feel old--and now look a little older--I do have my doubts I'll ever feel elderly.

 

[CreativeB]

I'm 53 and right now feel old. I am just about managing to keep going with work but can't do anything else. I'm very unfit, ache all over and am stiff. I'm hoping (keep hoping) that if I can manage my conditions and symptoms better and can improve my symptoms then when I retire I will be better as I won't be working and travelling. But now I am wondering if that can happen

 

[Wishful]

My biggest concern is isolation. It’s hard to have friends when conversation causes crashes so I’ve avoided any social engagements to the point of being mostly solitary. I shouldn’t complain since I have a great supportive partner but aloneness for too long, like lack of sleep makes everything else more trying. I’ve got to work on this.

I don't have any recommendations of how to deal with solitude, but maybe it will help you to know that other people handle solitude without problems. I've been avoiding social contact for close to ten years now, after realizing that socializing triggered PEM. I live in the woods, and visit town for shopping and library books every three weeks or so, and generally don't engage in lengthy conversations when I do. It (or maybe the driving) still triggers PEM.

I don't feel lonely though. I have books to read, and internet access. I have plenty of chores and projects waiting (more than I have energy for). I go for walks in the woods more or less daily. I occasionally interact with wildlife (even mostly one-sided conversations), and can happily report that socializing with wildlife doesn't trigger PEM. :) I don't feel any need to visit people, or have people visit.

Part of the normal human need for socializing might just be what we're trained to expect. Maybe if you question whether you really do need more socializing, the answer might be 'no'.

A question for everyone: does online socializing (via text) trigger PEM for you?

 

[mermaid]

I am 66 so feel that I am in the ageing bracket. It is a relief to be retired and not have to worry about making money to survive any more (I was lucky to get my pension in the UK at 62 as women only a year or so younger will have to wait until 65 or even 66), but I am noticing that my energy, not great of course due to ME is declining.

I had a series of 30 eye operations close together, 2 of them serious, and after the last one a year ago, my energy never really got back to how it was before. I used to belong to a dance/theatre group for disabled people (but not with ME), and was in it, on and off depending on my health for around 12 years, but now I have left again as recovery was taking too long after each weekly rehearsal.

I do have a husband, but we both value time away from each other during the day so we tend to live our own lives, but of course support each other in different ways. I use the computer and he doesn't, and he can walk more than I can, so we share tasks for now. He is 6 years older than I am and much fitter, but I know that one day that could change.

I feel lonely if I stay in all the time, so I do try to get out, currently volunteering at a charity shop and putting donated books online for sale. It works pretty well with the ME as I mostly on my own in the room doing it, but can get up and go downstairs and say hello to people when I need a break.

Physically, I don't get a lot of exercise in the winter, but in the summer I like to garden which I can do in short bursts.

I do worry about the future as we haven't got a car. Both of us suffer from anxiety, and my husband stopped driving for that reason, and I never learned for the same reason. Sometimes I get depressed with the symptoms I get - principally pain in my stomach which is variable, but very debilitating at its worst. Also I have had frequent viruses in the past, though that may be improving a bit just now. My life is very 'small' and limited, due to the ME, and the lack of transport, and the fact that my husband also doesn't like to travel much because of the anxiety. I feel that I would have more friends if I was not so ill, and would travel to see relatives more often. I have horrible food intolerances that make visiting anyone a bit of a trial. I have a friend who lives about an hour away on the bus and I try to see her a few times a year, but don't go much in the winter. another friend recently moved away.

I used to sleep very well but recently not so good. One of the problems with older age is that other health concerns tend to crop up. I got the diagnosis of osteoporosis a couple of years back but I can't exercise much. I think the stomach issues I have are related to having a hiatus hernia, but have been able to find nothing to improve the pain (diagnosed as non ulcer dyspepsia) other than Omeprazole and that is not good for osteoporosis, so I try to stay off it mostly.

 

[taniaaust1]

I'm 48 going on 140. My best (only) friend is 92. I have more in common with her than people my own age . Sometimes I think one of the few things the illness has given me is a head start on old age and what a horrible shock it's going to be for the rest of them.

same here. I feel at least 80 and function like an 80-90 year old. My best friend is actually in his 80s and he can do more then I can though he's certainly starting to show his age. Sadly I'm fairly sure I already know what old age feels like at only 45.

I'd be getting better services then I do now if I was elderly.

 

[ahmo]

@Stretched 69 yo, 15 years ME, living alone, essentially housebound. I go out to shop, or doc appointments. Can't do much, eg. 15 minutes cleaning up. I feel very fortunate that, in retrospect, I've spent a lot of my life on my own, don't have family. I don't experience loneliness much any more. I just do what I can, generally not in any sort of misery. I read novels as my main occupation. Hard to tell how normal ageing is affecting me, as there's nothing normal about my body and lifestyle.

 

[taniaaust1]

Stretched, though Im middle aged I do want to say something to you due to what happened to my nanna who had FM and some other issues (depression/anxiety/IBS etc)

It is very worthwhile planning ahead and actually acting on problems you can see for yourself before coming up before you find yourself in a big rut with them.

My nanna was a very social person and very happy with her husband till he died and then she was a complete mess and could not function. He had done actually a lot for her. Due to her age she was less and less able to deal with things and her once beautiful home ended up looking a wreck as she didnt have the energy to be worrying about things such as house maintenance.

My grandmother has a big family and she would expected that family would of helped her out but that didnt turn out to be the case. She was old and frail and just getting elderly services such as some housecleaning and someone to take her shopping but people when they do get old they can often need more than this.

Then she got sick one day and a doctor left her sitting in a waiting room for 4-5hrs before asking her to come back another day as he had run out of time, something my nanna being so fragile should not have been left that long like that. That then put her off of going to doctors again so from there she did not get the medical help she needed. (I think elderly people are not as tollerant to bad experiences as younger people are).

She ended up dying a very horrible death due to this of something which she could of got treated, she died of blood poisoning.

I'm sharing this as none of this would of happened had my grandparents moved to a retirement home where she was easily able to access other people whenever she wanted, if she wanted and got to know others and had services more arranged for her. She would not have been left all alone as she was.. she left possibly doing that way too late, at the point doing a move become too big of an idea for her to do so she could no longer consider it.

So I strongly suggest to really think about your future and on setting up what is best for you esp if you are deteroriating.. ask yourself if you would be still ok where you are if loss the one who supports you now. When you are older, things can change quite rapidly

all the best to you.

 

[jesse's mom]

A question for everyone: does online socializing (via text) trigger PEM for you?

I am not able to get out much. Face to face causes me to have PEM the most. Especially if someone is mean or negative. It feels like I can be affected by other people's electrical energy from their body. So I can text, or email without any problems.

I am only 54. This illness hit me hard 8 years ago, although I was never the same after mono. I suspect I was in relapse remission cycles most of my life. My mother was very hard on my until these last few years. Now that she is 77 her thyroid has pooped out, she is going blind and falling a lot. She is finally compassionate with me. I hate it took her feeling her age and mortality to get there.

 

[Wishful]

It wouldn't be other people's electrical energy affecting you. The visible and audible social cues would be much more powerful at affecting your own emotions.

 

[Hufsamor]

@Wishful A question for everyone: does online socializing (via text) trigger PEM for you?
It might.
But of every kind of social interaction, I tolerate texting best.
I ask my friends to not call, but text me.
If an online discussion gets to intense, (doesn't have to be negative), it might be a trigger.
How is it with you?

 

[Wishful]

I haven't noticed any PEM triggered by interacting on online forums. Some of the discussions had gotten a bit intense, but I didn't notice PEM from those either. In-person interaction does trigger PEM. I haven't participated in any online voice discussions. I did have to talk on the phone for a while recently with customer service, and I think that didn't trigger PEM. Not definitely anyway.

 

[Wayne]

It feels like I can be affected by other people's electrical energy from their body.

Same here. -- My wife went out a couple days ago, and when she came back into the house, I could sense something was discordant about her energy--before I ever even saw her or spoke with her. Turns out she had slipped and fallen on the ice. -- I believe other people's energy can affect us in multiple different ways.

 

[jesse's mom]

thank you @Wayne ! People think I am crazy when I tell them their energy feels like a tuning fork.
I hope your wife was not hurt falling!