Feeling really down

I feel for you. I live on my own so have no one to help me. It sounds like you could have help but they don't see the problem. WHat on earth was he thinking of taking you out for 3hrs!!! proof he doesn't understand your condition.

After suffering for many years with a confirmed diagnosis and my G telling me to stop boom and bust I feel that I am now on the road to recovery. What I did was to learn to say NO and do things initially in very small doses. I had to reducate my body and I believe it is working.

I don;t know how much you do but I would pull a plan together, sit down with the family and say this is all I am giong to do and I need your help to make me better. If you can do something for 5 mins a day that is all you do.

I view it like learning to run a marathon, you don't run 26 miles you work up to it. I know we are all different but it worked for me. I upset a few friends by keep saying No, I can;t do that but I am glad I did.

Keep smiling and get them to help you and don;t feel guilty

So very sorry for what you're going through, Tina. And this is weird, because I, too, had a major relapse in 2013. Since the relapse, I've had to deal with nerve issues and difficulty moving, along with extreme post-exertional fatigue. The fatigue is so severe that I can't talk on the phone or even much in person. This has resulted in almost total isolation. I've been married for over 30 years and am grateful for a husband that has stuck by me. However, he's at work all day and, as a musician, often goes to music events at night. Almost all of my friends have deserted me and don't even respond to my emails. These are friends I've had for over 50 years. So I do understand what you're going through. I have various coping strategies. I meditate every day, which helps calm my mind and even helps my mood. I took a free online 6-week course, which teaches a completely secular form of meditation. In addition, I practice mindfulness. In other words, I stay in the moment as much as possible, not thinking about how things used to be. I've found that's a sure recipe for feeling miserable. I've found a lot of sedentary activities that I enjoy, like reading good literature, following politics via the newspaper, listening to music, watching movies, and eating ethnic food that my husband brings from various restaurants. We've also been hosting house concerts--that is, my husband does the hosting, and I do the listening. We're also going to host science symposiums (again, husband will do the hosting, while I'll be in the "audience"). You can see I've had to get creative to figure out how to have a life with this horrible illness. Where do you live? Just curious. I understand that you feel down and alone, however please know that you're not alone in these feelings. So many of us with ME/CFS grapple with these feelings, and it's difficult. No way around it. Please keep posting here. We do understand.

So sorry to read how badly you are suffering. Do you have a sleep dr.? a Neurologist? there are treatments, (Xyrem), for sleep. I've been taking it for around 12 years. It gives me the deep and restorative sleep that we need so much and cannot get. Maybe you can find a dr. to prescribe this? It's the only drug that makes a big difference in my fibro.

Hope your life will have some positive areas. Search them out. Three hrs. is too long for me to be with people, too. I'm good for one hour and a half. But then, I'm 75.

Hi, Tina-

First, I'm so sorry that you're having a rough time.  All of us here know what you're going through.

I read an article today on good (and not helpful) ways that others can respond to a person with anxiety.  A lot of it applies to any condition.  Your husband did the unhelpful thing.

Here's one piece of the article..

7. Don’t say, “There are people with much bigger problems.”

Anxious (or sick) people generally know this, and already feel guilty about the anxiety they are suffering for that very reason. Being reminded of it actually makes them feel worse.  Instead, try: “I’m really sorry to hear that. Do you want to talk?”

Like you, I worked all my life, about 30 years, before I had a surgery that put me into full blown CFS.  I haven't been able to work full time since then.

Being chronically ill is a very lonely experience.  Only fellow sufferers truly "get it."

Finding people to share with is really important, in my book.  Writing it out, like you did here.  Close and empathetic friends, a counselor or minister.  The isolation and ruminating makes things worse.  Distractions are good.  But grieving is important too, for the life you no longer have.  Maybe you'll get better, even a bit...(I walk now only because I got a dog!)...but maybe you won't, and of course you feel sad.  Recognizing your limitations, setting them with others (including your husband), explaining when necessary.

Trying to not offer too much advice.  This is a lonely road we follow, but keep reaching out and be kind to yourself.  

Hi Tina.  you have my deepest sympathies. sometimes, the worst part of this illness, is the feeling of being ALONE & isolated with it. it's very hurtful when one's  nearest & dearest  just don't  understand how this illness makes one feel physcially & emotionally.  it feels  that in our moment of need  those closest to us can't handle our pain. denial is a defence/coping  mechanism ppl resort to when they don't understand or/and just can't handle situations.  that's not your limitation.  

Tina, right now you need your Doctor to take things in hand to get you over this bump  until you're stronger and able to take charge again. right now, you need support with adjusting to this new way of being in the family & in the world. don't forget what a capable woman you are - having contributed to society for so long, raised family and kept home.  that strength & capability is still there, just temporarily interrupted by the illness. 

speak to your Dr and ask for help with your mood - whether medcication or CBT or both.  you need that right now to kick start the adaptation process. you also need pain medication.  don't let anybody make u feel bad about the fact you're in pain. you haven't chosen to be in pain or to  have this illness. pain is one thing, but being made to feel bad about it is insult on injury. 

if you are in the UK, search out a support group and the nearest ME clinic in your area.  ME clinics run 6-8 week management courses. look up the ''Action For Me'' & ''ME Association'' websites.  they give details of both. there are also ''pain management'' clinics as well as community support, if you're UK based. you're Dr should be able to refer you to the community team. 

i'm so sorry to hear you're friends have dissappeared.  sadly  that tends to happen & is v.  painful to come to terms with.  but that pain passes too.  it's possible to make new friends who do understand this condition & who will give support and emotional nourishment, especially during the grieving process.

 i hope, as someone else has commented, that you get help with getting an adaptation plan together. every little step you take will help to get back to feeling in charge again  and being able to manage the condition's  limitations. 

meantime, all good luck and do  use this forum for help and support. we've  all have  been where you are right now, to agreater or lesser degree. they  will understand how you feel.

positive/healing thoughts going your way. 

best wishes

C

 

Hi Tina,

Sorry you're feeling so alone with it right now. Its hard to accept people you care about don't get what's going on with CFS/ME. It can feel like an extra kick. Could he go with you to the doctors next time , help him understand what you have to deal with?

My son went to uni in September and I know how different things are for me now as he helped me so much.

I kmow its hard but, try not to compare yourself to what was, I too can't work and mourned that loss. It affects how we view ourselves and although its difficult on bad days to think of a different reality in the future, be gentle on yourself in the present. I had a good cry earlier because of having a few hard days. I find it helps to get it out of my system sometimes.

Hope that is somehow helpful

B

Hi everyone,

I would just like to say a huge thank you to all of you for your advice and support.  I knew there would be people on this site who have been there and go the T shirt.  I am as stated very low at present but am off to G.P. on Thursday so hopefully will be able to start to build up again soon.

I may not know you all personally but it feels like I do if you get what I mean and can only reiterate thank you so much for listening and caring.

Txx