Getting Irritable and Short-Tempered

Janet--I'm almost (gulp!) 71. No menopause going on here.

Awe I am 61 so non going on here either !

Have you been on any different meds or anything ? X

No, no different meds. I agree that meds are top on the list of things to look at when something changes.

Well said, Littleme!  Menopause has made my symptoms much worse, too. And, now I have this neck issue which is making my neck stiff all the time and making me feel weak. It's tough living with a chronic illness, especially one that very few understand.  Good luck to you, too! Karen

I also have had the neck pain on and off for years. Usually kicks in when symptoms get worse. I think its common in Both POts and ME.. and funnily enough now im going through menopause and talking to lots of other women who do not have any chronic health issues, alot of them also have the neck pain and stiffness .. so clearly its common to all 3 issues. Its clearly inked to tension and anxiety and nerve issues, a few do have skeletal issues but most have no problems that show up in tests.  I found the best thing for it is a neck/shoulder heat pad. You can buy them on Ebay and Amazon .. relax in a chair and plug yourself into the mains    I also got some relief with the tens machine ... I found pain killers had no  effect on it which is why i assume it is nerve related. Hope you are getting some relief soon Karen... from my experience its not constant and does fade ... and then flares again from time to time. But i know what you mean about how its makes hard things even more of a struggle as its such a weird pain/ache.  

I can't imagine dealing with menopause on top of ME/CFS. I agree that sometimes everything just gets to be too much, which is part of living with chronic illness. Something else is bothering me...I've seen the new documentary, Unrest (about living with ME/CFS), which is so well done. Since people around me don't understand what I'm going through, I've been recommending that they watch this film. I'm hugely disappointed that both my sisters-in-law have decided not to see it. This, in spite of the fact that one of them has a daughter who apparently also has ME/CFS! I'm pretty much feeling like they don't care enough to take 1 1/2 hours out of their lives to see this movie.

I know a few who are dealing with an awful menopause as well as ME.

I haven't seen the film yet Jackie. Just shows how some people don't even want to try to get a better knowledge of ME isn't it. And it man s it more hurtful when it is a family member. If their daughter also has ME well I wish the poor girl all the luck in the world with a mother who doesn't want to be better informed . x

I have a heat pad too. They do bring a bit of relief like the hot water bottle does. My pain is pretty much constant . I have tried a tens machine . once got it free ! It didn't help much though .

Nerve pain is pretty horrendous ! X

Ive lived with ME and POTS for 28 years.. and at times been bed ridden for long periods... it took me 25 years to get fully diagnosed , but nothing prepared me for what menopause had in store I know we have talked on here over the years about ME , i believe the first time was about the nerve pain in the skin over 3 years ago. Chronic illness is so isolating and when our so called family dont want to know it makes the burden that much harder. Im lucky in as much as my Mum has ME.. she got it from the same bout of glandular fever i got mine, but  she got diagnosed over 15 years ago . We can chat and compare stories, but i dont like to burden her as she has her own issues to deal with. If your family do not want to listen there is nothing you can do, some people prefer ignorance and stick their heads in the sand, its their way to cope with it. Maybe they are scared to watch it as it will make it real and also show them just how horrible this condition can be. As they say .. you can lead a horse to water but you cant make it drink.. I myself have not watched it but that because i refuse to pay £10 for something that should be free.. so it can reach as many people as possible and help to bring awareness and by charging for it they have closed the door to alot of people . 

I agree that some people avoid some things because they are scared to know the truth or what may be involved. But some people are just downright not interested too.x

Hi Beverley.

You are so right that in the end you just have to let some people go because the situation has little or no chance of changing with them. They are just wasted energy .

And yes people on the whole do not realise the effort we put into things. I like to craft. It takes me hours and hours over a couple of weeks to make a card because I put a lot of detail into them. I stopped bothering doing them for certain people because they never even thanked me let alone and thing else. ! So they were put on the crossed off list. My cards are usually late for birthdays etc. But the people I do them for never mind as they know it takes a lot out of me.

I cancelled Christmas years ago and so glad I did ! Going through the motions of these things was just a complete waste of my precious energy and time.

Take care x

Hi janet,

Thankyou for your reply. I used to make cards too but energy not up to it. I have children so feel obliged to have Christmas still. I've had to have more help this year and I had a very difficult Christmas Eve where my children made the buffet which I ate and then went to bed. I feel someone twice my age these days! 

I love the Christmas trees and how people make an effort and guess that's the Christmas spirit I hope for yet some people didn't even say thankyou this year and that's hard when you have put in the energy that you don't really have. Also, it's difficult if you do say anything because I am getting met with people seeing my comments negatively when I know they are neutral! You can only be true to yourself and brush it off as their stuff but, it adds a bit more drain to the energy meter whether I like it or not. 

I have done far too much these last few days and will be having to put in some decent rest now. I will also be thinking if it is worth my energy to put in effort for those who don't reciprocate it.

Beverley

Hi, Beverley--

What you say in your post rings so true for me. I'm feeling better today, which is a good thing. It's very frustrating when, for seemingly no reason at all, my ME/CFS gets worse. On Christmas Eve, my husband drove me around the neighborhood to look at the Christmas lights. All I did was sit up in the car. After 20 minutes or so, I started feeling ill. When we got home, I felt really ill, with chills, and had to go to bed. In general, my post-exertional malaise (PEM) has gotten worse. People don't understand what I'm going through, nor do I expect them to. But when a friend I've had for almost 60 years doesn't visit for 5 years, when I explicitly say I miss her and would love to see her--that really hurts. I was very direct and clear with her last year asking her to visit. She said she would, but then cancelled. Another problem is that when occasionally I can see someone--like my sister-in-law a few days ago--I might seem ok. But what she didn't see is that after the visit, I got sick and felt terrible for days. I just spoke with her today, and she remarked that it was great I was feeling so much better. Another time, I got sick for weeks after having a long phone conversation with my cousin. I'm sure I sounded great during the conversation, but of course she never knew about what happened after the conversation. This difficulty in communicating how awful this disease is when I'm out of view of my friends is why I've been recommending the film "Unrest." Jen Brea shows so clearly the effects of PEM. I'm so thankful for my husband's support. I don't know what I would do without him. I'm wishing you the best in coping with this terrible illness.

Hi Jackie,

Unsure why the message disappeared! Like you I find it hard when people don't see the full picture and their conclusion is that you must be getting better. I appreciate why you want them to see the film so they can hopefully get a sense of what This condition does to people. I truly believe friends and family just want us to be well and don't get that we are struggling on the inside. How the exhaustion is unbearable and how hard it is to see people and not get payback. I am really struggling at the moment. Meeting people has made me very ill recently and even when I have said this, it has been ignored. I think people believe that if it is a positive time we have then somehow that will be less exhausting. If we are laughing and having a good time, we must be over exaggerating how ill we feel later. 

It is truly a terrible condition and I am shocked at how debilitating it is and how misunderstood it is. When I didn't have it, I too probably could not imagine the control it has on peoples lives. How a little activity creates so much payback. I'm in the 5th year since I started with it and it is getting harder to imagine my life before but, I still have a flicker of the woman I was and hope to be again.

Stay hopeful and rest when you can. I know that you are more housebound than me and that the little trip out must have felt maybe a little indulgent even! Savour the memory of it before you felt ill. Where you were able to look at the lights and enjoy them.

Your friend not coming to see you sounds quite upsetting when you had such a long friendship. That's a real shame she can't make the journey for whatever reason that is. Has she ever said why? 

Beverley

Thanks for writing, Beverley. Yes, meeting people is very exhausting. I'm still figuring out how to let them know without sounding like I'm whining or asking for sympathy. I don't want sympathy! Just a bit of compassion and understanding. When my friend decided not to visit me, I decided not to reach out to her any more via email. And she decided not to reach out to me anymore either. So there you have it. End of friendship.

Hi Jackie,

 I know what you mean. Hard to strike the balance between enough information without it sounding under or over the amount of detail the other can understand. It feels like I'm doing myself an injustice sometimes. I don't think people belief that I 've just spent 3 days in bed or ive struggled to walk that day as often there's some sense of 'normality' when they see me. And do they want the boring details which they are likely to not belief anyway! The condition needs more publicity as we're exhausted to begin with.

We've been dealt a tough card-no doubt about that.

Beverley