The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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CFS and Aging: The unique challenges

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Apr 30, 2016.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    I'll be turning 65 this year and have had CFS since I was 36. I've found that aging with CFS has brought about many unique challenges. Just the natural aging process itself mixed with an already weak and deconditioned body has caused me to reevaluate new limitations and increase my pacing.

    Other life challenges, such as when my parents were alive and I was responsible for overseeing their care and finances, brought a whole new set of physical and emotional challenges. I often felt guilty that I couldn't do more than I did to help them, but looking back I'm amazed that I was able to do as much as I did. I often felt guilty because I was measuring my performance according to how some of my healthy friends were managing their aging parents. When I had to place my mom in assisted living because I could not care for her myself, a hurtful remark was made, "We believe in taking care of our own, and would never do that." These kinds of things caused much grief at the time, but I know better now and am at peace with the way things played out.

    I've also been experiencing a significant relapse for over 12 months that doesn't want to abate despite all the efforts my doctor and I have made. Over the years I've tried many therapies, medications, treatments, supplements, just like we all have. For me, nothing has really made that much of a difference. A little maybe here and there, but there seems to have been no real rhyme or reason for why I've had better seasons of life with CFS than others. Sure things like stress, diet, medications might change the way the wind blows for awhile, but by and large this disease has had a mind of its own .

    I've gotten to a point where I don't get too excited about the latest findings, tests, and treatments. I've jumped on pretty much every bandwagon and am tired of doing so. My latest medication try was with LDN. It seemed to help with some things but in the end made me feel worse and I am glad to be off it. I know it works wonders for some, especially those with MS and other illnesses. But not for me.

    I have found the most relief in calm acceptance of my condition and life. I am happiest when I roll with the punches, count my blessings, and enjoy focusing on what I can do - even if it's just closing my eyes and listening to the birds singing outside. Or enjoying simple pleasures like watching my grandchildren play. I can't do all the fun things with them that their other grandmothers do, but I can talk with them, read to them, and color. :)

    My grandfather was born in 1890 and lived trough 2 World Wars and lost everything in the Great Depression. By the time he died at 95 he'd seen more trouble than anyone I had known. And yet he was always content. He often quoted these words to me from the Bible.

    “ I have learned to be content in whatever circumstances I am. I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need. I can do all things through Him who strengthens me.” Philippians 4:11-13

    I recently stumbled upon the following 2007 article from The CFS Chronicle on CFS and Aging and I sure could have used it a few years ago. Just knowing that my challenges are so common is encouraging. Maybe it will encourage someone here.

    Blessings.
    http://solvecfs.org/wp-content/uploads/2013/10/cfsaging.pdf
     
    Last edited: Apr 30, 2016
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  2. AndyPandy

    AndyPandy Making the most of it

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    Thank you for your words of encouragement @2Cor.12:9

    Best wishes Andy
     
    Mel9, ahmo and 2Cor.12:9 like this.
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @2Cor.12:9, thank you for your thoughtful post. My circumstances are similar to yours. I turned 62 this year, and came down with ME/CFS at the age of 36. Throughout that time I cared for aging parents who for the most part stayed in their home until their illnesses were best handled by nursing homes or assisted living. My sister arranged for my mother to move from Seattle to Ohio, so that she could oversee her care for the last 5 years of her life. I never got to see my mother again after that move.

    Before my parents' health deteriorated, I was responsible for picking them up from the hospital when they were discharged. This went on for many years. My father lived to be 93 and my mother lived to be 87. I don't know if longevity genes will play any part in how long I could live, but I'm not looking forward to being 90 and still having this illness. There is no one I can receive care from, as I have no children, and the three siblings who all live out-of-state aren't even interested in visiting.

    I still intend to pursue whatever avenues may be available to help fight this illness. My life sucks so bad it's unbearable.
     
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  4. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @CFS_for_19_years - I am so very sorry to hear how miserable and alone you feel. Do you have any kind of support at all? We can keep hoping that with the advancements being made in recent years that something can be done to help us significantly before we reach 90, 80, or even 70.
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I have the usual slew of doctors who gaze at me in bewilderment, a weekly visit from Meals on Wheels (gotta eat), the occasional phone call from one sister, and all the wonderful peeps here at PR. I used to have cats, but after the last one died it took me five years to remove all the used bagged kitty litter from my deck (I'm too weak to do much trash removal). Worst advice from doctors:...."Maybe you should get a cat."

    I'm hopeful that something will emerge as a viable treatment, but it could be several more years of waiting.
     
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  6. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Please PM me anytime you want to talk! I'll be praying for you.
     
  7. brenda

    brenda Senior Member

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    Thanks for the helpful posts and the article. I am going on 67 and the challenges outlined are so true for me. My parents are no longer here, but l had to assist them a great deal but also my in-laws who had dementia and cancer, both of whom l nursed at home. Now l have little or no help from my estranged family who never believed l was sick anyway. From childhood with ME they thought l was a hypochondriac and it stuck.

    One of my main concerns is regarding MCS as there is no way l can go into assisted care. I am also in unsuitable housing long term as it is on the second floor so that is a concern. But the main thing is knowing what symptoms are a new condition. I have recently become aware that l am diabetic despite a super healthy diet (before l changed to autoimmune paleo which has been very beneficial.)

    One thing that has helped me and for which l am very grateful is because of pesticide poisong, medications have been off the menu for 20 years and despite needing constant pain relief and antibiotics at times, l have survived with out them and my mental function is better than it would have been.

    There are all sorts of social things going on for the elderly but l can't attend and even more so with my new diet, and people assume l am just antisocial. I manage to get to my farm shops in my car but don't know how Iong it is going to last out, being 16 years old. So things are worsening and new conditions springing up like gall stones again despite a super healthy diet.

    I am improving though on AIP and it is counteracting aging ATM. It is hard to keep on when there is no reason for me to be living and fighting Lyme disease without any medical help at all. It is only my faith that keeps me going and the belief that l am receiving guidance.
     
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  8. AndyPandy

    AndyPandy Making the most of it

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    Sending love and encouragement to all of you.
     
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  9. mermaid

    mermaid Senior Member

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    Thank you for the article @2Cor.12:9 It has some very interesting points in it - e.g. trying to distinguish the ME/CFS bit from the ageing bit, especially as mine started after aged 50 anyway. The wondering if the cognitive issues are dementia....

    I am nearly 64 and been ill with ME/CFS for around 10 years (mine came on gradually so I was on the slide before this). I moved with my husband to a quiet spot in the UK some 13 years ago, (on top of a steep hill) and so hadn't factored in the problems it would cause when trying to go anywhere as I aged on top of the illness. Thankfully we do have some public transport and I am not as ill as some on here.

    We have no car and public transport is I find, quite stressful for travelling distances. I have just returned from a 14 hour round trip to see my 94 years old mother and I only manage that at most twice, and often only once a year. I am lucky that my brother lives near to her and is in charge of her care.

    However en route to her I also visited my adult son who has severe mental health issues and I have spent some years trying to help him from afar - just succeeded in getting 28 hours of free care but it's been a long haul, and included an official complaint along the way this year.

    I have learned to manage my ME/CFS better on the whole, and some symptoms have even improved with better understanding and support and research on my part (eg migraine aura have gone with realisation that it was caused by hypoglycaemia). However the lack of stamina remains, and recovery time, and I see my limitations growing as the ageing process goes on. I guess I hoped that I would catch up with some older people and be a say, healthy 80 years old person and on a par with others in time.

    However I still have some autoimmune disease to contend with, so who knows? I am lucky though that I can do some gentle exercise and tend my garden which helps my mood as well as my body.
     
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  10. belize44

    belize44 Senior Member

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    I am getting close to the six decade mark, and it is so encouraging to read the stories of others here. I also hoped that I would be much better before having to contend with old age! I have been ill for over twenty years, and during those years I faced horrific stress with an abusive spouse, becoming a single parent and then having to give up things, one by one. The hardest is having a mentally challenged daughter, who lost her two children to the foster care system and whom I was too ill to take care of myself. This is one of the hardest things to live with - knowing I will never see and hold either of my two grandchildren. This disease has cost me much and I am having a hard time forgiving it, today.
     
    Last edited: May 2, 2016
  11. ahmo

    ahmo Senior Member

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    Thanks for opening this topic and all the shares. sending a particular heart felt hug to @belize44 for the loss of your grandchildren.

    My disability pension became old age pension last year. My parents both lived to be old. I do my best not to think about the future. At the same time as I do my best to make contingency planning.

    After my old cat died last year, a week later I gave in and got a 9 month old kitten, a wonderful being. ...And then, wanting her to have more stimulation than I'm capable of, I got her a friend, who had been a cage-mate at her foster home.:rolleyes: This is now 3 and 4 months ago. I still have an ongoing inner dialog about how long I'll be around, how long I can continue their care...but the benefits so far outweigh the other considerations. I get so many laughs from them, and now I use my voice, I talk to them. relationships. Luckily I'm well enough to manage basic care, including disposing of litter. :cat::hug:
     
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  12. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @AndyPandy -Thank you Andy! And the same to you as well. :)
     
    Last edited: May 1, 2016
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  13. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @brenda I can't imagine how hard it would be to have no family support at all and am so sorry for you. I do understand what it's like to have people think I'm lazy or a hypochondriac, or depressed, or whatever. Especially frustrating when it's the doctor!

    Like you, it if weren't for my faith there have been many times I would have given up, family support or not.

    I love reading the old Puritan writings because they talk so much about suffering and the comfort they got from God. (they rarely lived long and were full of serious ailments).
     
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  14. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @belize44 - Thank you for sharing your struggles. Sending good wishes your way. I have support but both of my adult daughters are ill too and they have children to care for (two grandchildren have special needs). Yes, there is so much sadness that accompanies this illness that impacts the whole family.
     
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  15. picante

    picante Senior Member

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    Is that because you don't tolerate drugs, and no natural treatments are ever offered by the NHS?
     
  16. picante

    picante Senior Member

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    I have two sisters. One is incommunicado and the other lives about 14 hours away by car. I'm the only one who has a chronic illness, but I'm the one who took on the responsibility as my dad's Power of Attorney in 2012. He has Alzheimer's, but lives nowhere near, so the work is mainly red tape and phone calls, which are enough to overwhelm me at times.

    My sister was not an appropriate choice as POA, since she is not organized and is fairly computer illiterate. And she was missing in action at the time, after Dad blew up at her. That brought back all the old pain. Of course he doesn't remember (but then, he never did remember those ballistic episodes, even when he had a memory).

    Now my mother and stepdad are spending a few months a year here in my town. They were detained here a few extra months this year due to accidents. He broke his knee, and he was almost mobile again when she broke her hip. Now they are back in California, and having to decide which place to live year-round, since they are both 80 now. I hope they choose Helena, because even though I have no energy to be of much help, at least I could see them. I'm no longer traveling these days, because I get sick every time I do.

    So ironically, I seem to be the only kid who is in a position to help out with three parents. Thank goodness for my husband.

    I'll turn 60 in October, and the next few years really don't look good to me. I'll be losing my parents, and I'm already so exhausted from trying to do more than is feasible. Even my husband (who doesn't have ME) got worn down this winter.

    Nobody but my husband seems to understand that helping out a little bit one day means I'm completely out of commission the next. My mother pays enough attention to hear and remember what I'm going through, but my stepdad always seems surprised when I'm laid up. He has boundless energy.

    I keep hoping for a breakthrough, but when I start using my energy to help other people, it becomes impossible to look for ways to help myself. My translation career got completely shoved to the back burner. That means DH is carrying the whole financial load.

    I don't know what the answer is. Universal health care would be nice. Research and treatment breakthroughs would be nice.
     
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  17. brenda

    brenda Senior Member

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    Yes l do not tolerate drugs but now that l know what l know, l would not touch them even if l did tolerate them. It is rare that the NHS will pay for natural treatments .
     
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  18. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @picante - I was in the same boat - 2 siblings but I was solely responsible for everything concerning both parents. Don't know how I could have done it without my husband's help either. My mom was the last to go and I accessed every possible service available to keep her in her own place as long as possible before moving to assisted living. She lived nearby and I visited twice a week but called every day. It was hard but somehow we manage get through these things. Best wishes to you.
     
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  19. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Just wanted to give an update to my above statement. After being off Low Dose Naltrexone for 3 weeks, tendonitis and pain came back with a vengeance. Alieve wasn't about to help either so I went back on the LDN. I only take 1 mg but it has alleviated a good share of it to where I rarely even need the Alieve (it was killing my stomach anyway). I also take 500 mg of Curcumin twice a day. LDN has done very little for the fatigue but for pain and cognitive function it has been nothing short of a wonder medication for me.
     

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