Has anyone on here gotten better? How?

Madge--I admire your spirit and attitude. I have a bit of a different take on social events, out of necessity. (By the way, I'm a senior citizen like you.) I have to say no to all these events, even though I'd love to go. I'm simply too ill to interact socially on any level, even on the phone. I've had to learn to accept my current life along with the limitations imposed by ME/CFS. I still love the things that I can do, like reading, watching movies, and listening to music. If I were to push through the fatigue and attend a social event, as you do, I'd simple make myself very ill and risk a relapse creating a new normal. This happened to me when I went on a trip with my husband 2 years ago. As a result of that trip, I have new symptoms I never even imagined. This illness has forced me to create a new life based on totally different assumptions about what makes a life full of purpose and meaning.

I think you have the answer in your comment Usually I just go and try to have as much fun as I can. Im the same - I simply wont let other folk see just how decrepit and bad tempered i have become! i laughing, but ruefully!  what caught my eye was your sewing - what do you make? at one time, I earned a living as a designer - working with fabric and generally have something on the go!  At the moment I have an order for two dresses to go to Spain, i have a jacket cut out for myself - it is bright orange cotton pique - it was white, so I dyed it - im going to line it in some vintage black silk satin which i have had in my workroom stash for hmmm over 20 years - and the border has tiny flowers, a bit like a fresia, in EXACTLY the same orange!  I think sewing keeps me sane - but you would blush if you heard me swear when my hands wont work and the needle falls from my fingers again!  do you have other craft interests?  Keep sewing!  kind regards, Peta

I make aprons, some for adults, but most of my orders and sales are for children's aprons (ages 1 on up).  I make them reversible, with adjustable necks,. I also make hot/cold therapy packs with removable covers for kids, plus felt hand puppets and hand-sewn hooty owls  Then, for cat lovers, I make catnip mats and fill them with our  dried catnip, plus catnip toys (and cat-themed aprons).  I have to work slowly, though, and like you, my hands don't always work so well. Then there's the stiff neck, occasional lightheadedness and head pressure from allergies/sinus, and the heart pounding when I move around very much.  So I really don't feel well all that often, but, like you, I find that sewing keeps me sane.  I can alternate standing and sitting, so I don't get quite so tired out.  And I take a lot of breaks.  Your jacket sounds very nice, by the way.

 I just finished a reversible apron for a man who wanted a Chicago Cubs  fabric on one side and a Chicago Bears fabric on the back.  He was so pleased that he put it on at the craft fair last week and wore it the whole time he was shopping.  He lives in Wisconsin now, as we do, but he's from Illinois,and his Wisconsin friends tease him a lot. He wanted this apron to make his friends laugh, and to tease them back.  Funny guy!  

What kind of dresses will you be making (your order from Spain)? Carol

Hi Jackie,  You're probably wiser than I am, by just staying at home.  I guess I try to make the effort because I just miss my friends and relatives so much. And I find it hard to just quit all the things that I've loved doing.   But the day may come, soon, when I'll just stay home too. I feel  worse than I did a year ago.

I'm sure that taking that trip two years ago took a lot out of you.  I know I couldn't take a trip anymore. I can only do short, one day activities.  Otherwise I'm tired for days.  I do try to rest the day before I go out. Sometimes it helps, sometimes not. I think that it's great that you  still are able to  find meaning and purpose by doing different things. It makes me feel that, as I become less able to do things, I can still find enjoyment in different activities.   Carol    :-)

Carol--I just had to respond to the last part of your post. You may not become less able to do things. You never know what might happen. For instance, there seems to be some very important ME/CFS research happening now. I think that finally, more of the medical community is taking this disease seriously. Also, I'm not wiser than you. I'm probably only more fearful of making myself worse. I think it's great that you're doing something creative in your life, like making aprons. I think creativity is food for the soul.

Thanks, Jackie.  What I meant is that maybe I try too hard when I should pace myself more, as you and others do on this forum. I let my enthusiasm get the better of me a times. I just found out that I have CFS recently, even though I've had the symptoms since the 1990s, and I'm still trying to adjust my lifestyle.  And as we get older, we often have more issues to deal with. I hope I can still do some creative things as I age, but I know I'll most likely want to change how I do things somewhat.  And that's okay too.    

Madge-Is there anywhere at all where you could go and take quiet rests?  Hopefully, lie down for a while.  Personally, I have spent a lot of time lying down in my car, but I'm just 49!

HI  Carol - you certainly makea range of goods and I have to ask - what's a hooty owl?  I love the idea of a grown man wearing his apron whilst out and about. Cant imagine many men doing that so he must have been thrilled with your work!  Ive made one of the dresses alread - its a sleeveless floor length dress with what I call a racing back - cut away shoulders in a double jersey stretch cotton/lycra mix, both dresses are in the same pattern, the first is made of a deep zig-fag in colours ranging from deep dark pink,and purples blues and greys with a fine black outline now and then.  The second is in a dark purple double jersey too.  The lady who ordered them lives in Spain - she is a six foot amazon living amongst very tiny Catalan people who come just a little higher than her chest!  Catalunia is in the top right corner of Spain - and Barcelona is not far away - maybe two three hours in the car.  She lives up in the mountains, with a fuente - a hot thermal spring, running past her front door - can you imagine!  right now i would swap this cold damp Scottish weather for a long soak in the fuente and then lie on a blanket in the sun!  I dont know Wisconsin at all.  what is it like?  do you have mountains and forests or are you more agricultural?  we are very lucky where I live - im near St Andrews in Fife - the home of golf- which i must confess, bores me rigid!  haha, this has to be whispered because it's akin to being in a church and denying the existance of God!  take care, Peta

The dresses you are making sound lovely! You must be an excellent seamstress.

 Men in this part of the USA like to "tailgate," which means they and their families have outdoor cookouts behind their cars before sports events such as baseball or football games  And they often order cooking  aprons made from fabrics that show off the teams they like. So sports aprons are popular. Men tend to order denim aprons too, for doing carpentry  or other shop work. I sell some for women too., But I like making children's aprons best.

Hooty owls are little owls (about three inches high) sewn from scraps of calico or other bright fabric. They are stuffed with polyester fiberfill and have large, felt eyes. Children like to give them names and carry them around in their pockets or purses.  My nine-year-old grandson carries his everywhere.

Today is the wedding we want to attend.  It will be later in the day, and the reception and dinner will be right afterward. It's only a short distance from our house, so my husband can bring me home if it gets too busy or loud and I don't feel well. I'll be all right if I can sit a lot.  It's also casual dress, so that will be nice too.  I want to at least try to be there, since the bride and groom are such good friends.  I'm taking it easy now, so am hoping I can do this.

Wisconsin is a beautiful state.  Many lakes, hills, and forests, but also some agricultural areas. The dairy industry is big here. Always lots of cheeses and related dairy products. Today the weather is cool and damp, with rain, and the temperature is in the sixties. But we had a very hot, humid summer, and I stayed home when it was really hot, since I always feel worse then.  Winters are cold and usually snowy.  A warm, thermal spring running past my front door would be lovely, like the one your customer has.  I'm going to look up the St. Andrews area. I think I know where Fife is.  I have friends who travel to Scotland now and then.  They tell me it's beautiful.

 

Hi Dawn, Yes,  good idea.  I could just sit in my car and tilt the seat back part way. My heart pounds more when I'm lying down, but sitting up will work. Or, just finding a chair where it's quiet.  At home it's my recliner.  When I'm out, I find that many places have very nice, furnished restrooms, with a separate room and lounge chairs. They also tend to have little alcoves where people can just sit awhile And, it's quiet. My heart palpitations, are unpredictable and while not dangerous, they can be unsettling, and then anxiety tends to set in.  I don't like to take things like Ativan (benzos) because they are addicting and also increase my fatigue.  When I'm at the wedding dinner tonight, I'll be sipping on a small cup of chamomile tea, which works on same of the same receptors (seritonin and dopamine) that the addictive meds have, but  it doesn't seem to be addictive at a cup a day.  It's gentler, but at least it takes the edge off my anxiety without making me as  tired, just relaxed.  Great idea about resting in the car.

C.

Good, I'm glad that idea seems doable! Have a nice time!

 

I thought that the doctors were less confusing and more coordinated in Scotland than in the U.S.!  Now I know differently!  So sorry to hear about that frustration.  Yes, I hope and pray that things will get better too.  "I don't want to live like this 'til I'm 80" is like a direct quote out of my head.  Did I write that on this forum previously?  "I want my life back." is another quote from my head.  But I have recently decided that I am going to try to flow with the new normal and see what I can learn from it and pay attention to what it has already taught me.  But did you notice that I said the word "try".  As you know, there are hard days.  In your post you describe some of the reasons why it is so hard.  You said"I can't sleep.....because it hurts so much."   The misery and the continual lack of sleep that this illness often brings for many of us makes it difficult, so we just try.  

Hi, I stay in Scotland too. Not sure if you are within travelling distance of Edinburgh but there is a place there called the Thistle Foundation who run an excellant Lifestyle Management course. I did this a few years ago and found it really helpful. I would also consider changing doctors if possible. The doctors I had when first diagnosed were terrible. One said 'I don't have time to discuss it with you, go and buy a book!' I have a much better doctor now who is really helpful and it has made a huge difference having a doctor who supports me.

Elaine and others here:  I really need advice. This post will be a little long, but I hope you'll  read it and give me your thoughts.  I've had to have a colonoscopy every five years because there is some colon cancer in our family, and I have had several polyps removed over the years.No cancer, although some of the polyps were the kind that could become cancerous if not removed.   I'm supposed to have another colonoscopy  at the end of October (this year, 2016) and I'm quite concerned. Until now, there was a bowel prep I could use that wasn't too bad.  It involved a Dulcolax tablet (laxative) and then drinking 1/2 gallon of a salty sweet liquid. It wasn't easy, and I'd get chills and heart pounding at times, but I got through it. The colonosopy itself wasn't bad.

Back in 2011,  I didn't have anxiety or adrenaline rushes with the heart pounding,but now I do.. I've been up for a few hours tonight, because I woke  up with a pounding heart and the usual  shaky, weak, frightened feeling I get every night. I have to get up and walk around, and  usually after an hour or so I can manage to fall asleep again. I didn't have this very often a year ago, nor was I as fatigued and weak during the day as I am these days.

And now, the prep I used to go through to get ready for a colonoscopy is no longer available. The new one (called Suprep here in the U.S.) has different ingredients, and is done twice instead of once. I'd need to swallow 16 ounces of a nasty, salty liquid, followed by 32 more ounces of water, all in one hour., then do it again 5 hours later.  A few people I know used this prep and they had an awful time swallowing the salty liquid. They also said they were very bloated and nauseated, had chills, etc. The second half of the prep is done by waking up at 3 or 4 a.m., and  doing the same thing again, five  hours before the colonoscopy.

Five years ago, I could probably have done this. But now, whenever my stomach feels very full, or I'm bloated, my heart pounds harder and then I get anxious, weak, shaky, and very fatigued.  I'm concerned about my hear, and the anxiety as well.  My local doctor says my heart problem isn't serious, although I do have a heart arrhythmia and heart palpitations for several hours each day, after sleeping or eating.   I take an anti-anxiety pill at bedtime, but after a few hours, I'll still wake up with an episode of heart pounding followed by anxiety or maybe it's an adrenalin rush. I've tried taking  Ativan (for anxiety) during the day, but it makes me even more fatigued.  It helps some with the anxiety, but does nothing to stop the heart pounding. I stopped the Ativan because it made me feel exhausted.

I'm going to see a cardiologist(for a second opinion) two weeks before the  colonoscopy, which is scheduled for the end of October.  I recently had an echcardiogram and wore a heart monitor for several weeks. I'll take along the results of those plus bloodwork I had done. So far, my local doctor could find nothing seriously wrong.  He doesn't really get it, and says that I need to exercise hard for 20 minutes each day. That makes the fatigue even worse.  And he wants me to take a beta blocker, but the last time I tried that (about 15 years ago, for heart pounding when I would walk or run with friends)  my blood pressure and pulse dropped very low, and I couldn't even go to work. I was too weak and tired to do much of anything.

I guess I'm hoping some of you,  who might have heart palpitations, have done all right if you needed a colonoscopy That might make me feel I could handle it without passing out or having about 18 hours of palpitations with the prep.

I know I really need to have a colonoscopy done,. It's good that there is a test to find and eliminate precancerous polyps. Maybe I should make an appointment to talk to the doctor who will be doing the procedure too. Not sure he'll understand how tired and stressed I am every day, and how much the concern about this is making my fatigue and stress worse.

 I realize everyone is different, and that you can't make my decision for me since neither you or I know exactly what's wrong with me (or with yourselves, for that matter)  but I'd really appreciate any encouragement you can give me.Maybe some of  you have had colonoscopies and can tell me what your experiences were.  Hope someone will reply.. 

Hi Madge, I don't have much knowledge of colonoscopies but I know exactly how you feel with the anxiety. It sounds like you are having panic attacks and they are awful - I've had them too. I got advice about them and have a few coping skills I can suggest. You could try putting one hand on your chest  and your other hand on your abdomen and take note on which hand is moving the most. If the hand on your chest is moving more than you hand it means you are over breathing which effects you oxygen levels so your heart will race and you will feel lightheaded and panicky. Try to slow your breathing down so you are breathing into your abdomen instead. You could also try breathing into a paper bag. 

(Cont)

Am sending two messages as things keep disappearing on my computer! You could also try listening to a relaxation track. There are lots of free ones on youtube. The Honest Guys - Hot Spa Of Deep Relaxtion is quite a good one or you could try a yoga nidra one which takes you through different parts of the body to encourage you to relax them. You could also try doodling on a bit paper or reading. What I do when I go to the dentist (I have  phobia about them!) is take a kids toy called a tangler with me and I find it really helps as I'm for using on moving my hands rather than what is happening to me. You can also think yourself that you did it before and got through it so you can do it again. Hope this helps.

Hi Madge. I can't be sure that my problems are the same as yours, but I do have CFS/ME and I do get palpitations if I get nervous and a heart murmur that becomes apparent when I'm extremely stressed. When I had a colonoscopy last year, I had to use a preparation that sounds very similar to the new one you describe. My colonoscopy was to be in the afternoon so I had to take the second lot at 6am. It didn't taste pleasant but I got it down. I can report that it didn't set off any heart symptoms, although I can report that it was VERY effective - I had to wear an adult nappy (diaper?) to avoid disgracing myself on the way to the clinic! I can also report that I quite enjoyed the colonoscopy procedure, with slow breathing and the occasional whiff of gas-and-air I managed to stay calm. I watched the image on the screen and it's not everyone who can say they've seen inside their own intestines! I hope that helps. Pixie xx

Sorry message was meant to say 'toy helps as I'm concentrating on using my hands rather than what's happening'. You can get other things like stress balls you can squeeze too which might be helpful. Brain going now - off for lie down!!

Hi PIxie,

Thanks so much for the comments and ideas.  I really appreciate it.  The nappy idea is a good one. So your prep was also in two parts?  The reason they want me to do both  parts in one day is because I'd have to begin the second part during the night (in order to be finished before my procedure). It really knocked the wind out of my sales when I foundout that the reasonably short, one part prep I'd used before is no longer available.  I'd had some palpitations with that one, but this will be a much longer prep, and I now have anxiety issues as well. I just hope I won't  faint or throw up, or end up in the ER making a spectacle of myself.  The colonoscopy itself, wasn't difficult at all.  I was asleep the whole time. I had to stay at the hospital longer than most afterwards, because my blood pressure was very low  ( it often is) and it took awhile to come up to normal. But, I could eat breakfast, so that was fine. Again, thanks!

Pixie,  Just to clarify things, when I was talking about the colonoscopy I slept through, I was referring to the last one I had.  My next one is coming up at the end of October. 

I hope you're having a good day. I feel reasonably good early in the day, but by afternoon I'm too tired and weak to do much.  Do you ever feel a little better in the evenings?  Sometimes I do. I wish we could get more help with chronic fatigue syndrome. All my regular doctor says is to exercise hard 20 minutes a day, every day.  People here were right.,,,it doesn't work. I  tried that and felt a lot worse.  Wish I could find a good doctor who gets it.

Hi Elaine, for the ideas.I forgot the paper bag idea. That might help. And also the drawing, doodling, or stress ball to squeeze.  I'll also check the youtube sources you mentioned.  Thank you!

Hi Madge,

I had the colonoscopy last year with the liquid prep you speak of. I also get palpitations from positional cardiac arrhythmia but didn't get them with the prep or proceedure. There were no known side affects from the prep.

Hope that helps and sincere best wishes as it's not a nice procedure at all

Beverley

Hi Beverley,  Thanks for telling me that Suprep didn't cause problems for you. I've been concerned because I feel so weak, groggy, and tired each day, and I was worried that i might actually faint or something from the lack of food, or the gas/bloating.  I hope the taste of the Suprep liquid wasn't so bad that i'll get sick on it. I know I need to drink it down somehow.  Most of these preps aren't nice. The only one that was easier for me was the Halflytely one, and that's no longer being made.  Too bad.  Any tips for getting the nasty liquid down?

I really appreciate your answering.

Hi Madge,

The prep is diluted in water and you can sip it. It tastes like flat lemonade I think? I didn't feel weak or anything but I did spend nearly all day in bed. I luckily had my proceedure on the Monday morning so could take the doses Sunday morning and evening. Cautionary note-stay close to a bathroom! If you feel you may have tummy pain, have a hot water bottle or wheat bag close by.

Beverley

Hi Beverley, I have my procedure at 10:45 in the morning, and I have to be at the hospital earlier, by 9:30 am.  I'm supposed to take the two doses on the day before, at 10 am and 3 pm.  Is that about the prep schedule you had? I hppe I won't have to be up during the night. I have a bowel with a lot of twists in it, so it usually takes me longer.  I hope I won't have tummy pain with this one. I did have mild cramps with one of the others, but not for long.  Thanks so much for giving me the details. It helps.

Hi Madge,

It may have been morning and afternoon for me i Just know I was on the toilet alot!

I think having it in the morning Is a better option myself as then you can let the prep do it's work the day before.

Is someone going with you?

Beverley

Hi Beverley,  Yes, my husband always goes with me.  I've had four or five of these colonoscopies before. (I lost count.)  But this is the first time I have more of a problem with heart pounding/arrhythmia coming out of nowhere, plus the weak feeling and heavy fatigue. I hope I'm physically up to doing it this time. 

It really helps to get your thoughts on all this. I was pretty  scared about it. 

So, you're saying that having both parts of the prep the day before, and then the procedure the next morning is a good option?  I'm glad you think so too.  

Hi Madge,

Yes, I definitely feel that being able to prep the whole day at home before is much better. I managed to have worked through it all so I felt comfortable to travel. I wouldn't want to travel if the prep was still In my system!

I'm glad your husband will be with you for a bit of moral support.

Good luck with it all.

Best wishes

Beverley

Ps. Do let the consultant know about the arrhythmia. They may be able to help out with what position you re laid In etc? I had ptsd symptoms which made me very anxious and I found explaining this as well as soothing myself helped when I had to have some mouth surgery. My anxiety made me extra gassy and that can ridiculously set my heart off! I had no anxiety with the colonoscopy which was a good year later.

B

Hi again, Beverley...

I already talked with the doctor doing the colonoscopy recently, because I always have to sleep on my back. He said he can do most of the procedure with me on my back and they will turn me on my side only for short periods of time. He'll also raise my head some, so turning my head doesn't cause me to get vertigo.  Being  older can be a real challenge sometimes.

My lower back issues are such that if I lie on either side, even for just five minutes, I have pain from hip bursitis.  I saw an orthpedist about a decade ago, and he said the hip pain comes from my back , and that I should try not to sleep  on either side. He was right. As long as I don't sleep on my side, I have no hip pain at all. As for the vertigo, I sometimes get that periodically when lying down and I turn my head too far  to one side. (That began with the viral illness I had decades ago, the one that left me with the chronic fatigue syndrome symptoms I now have) So I have a very nice doctor to do the procedure. He's had colonoscopies himself, and also has heart palpitations.  He understands.

I had to have minor foot surgery this morning, nothing all that serious. I can walk and the bandage will come off in a few days. But I got home at noon and am very tired. Allergies/sinus issues (can't take meds for it)  too. My arms and legs feel so heavy.  l  don't have nearly the energy that my husband has and he is older. This CFS forum has been so helpful to me with all this.

And thanks for your understanding and advice about the colonoscopy, prep. Beverley. Hopefully, my heart will behave.

Madge

M.