Feeling really down

Brain and nerves
1

Hi everyone with CFS/ME,

 Just need some support at the moment from out there.  My siblings are getting new jobs and taking breaks away frequently, my 19 year old daughter is getting on with her life at Uni, my husband is working all week and I feel my life has stopped since my major relapse in 2013.  I am on a roller coaster which I am sure most of you are but after working for 34 years without ever being unemployed is seriously getting to me now.  My husband took me out recently to dinner with some friends.  I was out for about 3 hours and by the time we got home I could hardly walk and in chronic pain.  I feel I can not lead a normal life like my family and friends and am becoming a burden.  I can't sleep properly I have thoughts of what was and what is, ( I know I am not alone), but I feel myself getting lower and lower.  I sit some days home alone and cry.  My husband tells me to stop there are plenty of others worse of which I know is true but unfortunately that does not heal my physical and mental pain.  This evening on T.V there was a programme about painkiller addiction and he told me to watch it as I was addicted.  He doesn't even acknowledge that somedays I don't even take the recommended dose, and other days I take more as instructed by the G.P as the pain can be unbearable in my muscle/joints.  I also take tablets to combat nausea when it is severe and it has to be severe.  I feel it is M.E and me and that is how it has been since 2013.  Prior to that I was working part time (diagnosed 2007), I am grieving for my career, my colleagues all but one who have long disappeared.  Sorry to be so down my I feel so very alone at the moment, backed into a corner with nowhere to go.cry

2

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

3

Thanks, I knew someone would be out there.  Yep! you are absolutely right.  It must be hard for those of you on your own with no help at all, but on a positive note at least you don't have to put up with the stupid comments etc Sorry have not been this down for quite awhile and I appreciate there are people worse off than me but I guess we all have those periods of what was and what is now.  Thank you for replying and I am not going to feel guilty from now on and I am going to try and ignore any stupid comments, and the biggie learn to say NO.

Tx

4

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&quot. 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.

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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.

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Hi Jackie, thanks for this.  This site is brilliant for support and advice.  Weird we had relapses in 2013.  I suppose I am being a bit mean, my husband is not totally aware of the condition.  If I am honest it is not easy on him, as we all know those of us with husbands/partners.  I've been married 24 years, and I suppose he misses the get up and go me, always running here, doing this doing that, making sure everyone ok and keeping things in order.  As I say we do not know what is around the corner so we should live life by the day and enjoy it someway.

I live in Banbury, Oxfordshire.  There is a local support group but I have never managed there sessions yet.  They have been in the centre of town.  They meet once a month and yes you guessed come that day I am stuck in the house.

Tx

7

Many thanks for this.  I am off to see G.P Thursday.  There are quite a few things I need to discuss with her so I will add this to my list.  In fact there isn't that much support around here.  We get the odd meetings at the surgery but the CFS clinic has moved nearer Oxford which is miles away so difficult to get too.  It surprises me when going on the site how sufferers in different postcodes are offered different treatment and advice and have different facilities.

Tx

8

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.  

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Hi thanks this was really useful and I will explain this to him.  I have had a pretty rough time since 2013, lost job took redundancy because it was eaiser due to the illness, Mother was diagnosed with Cancer and died September 2014, daughter started Uni week after the funeral and was diagnosed with Aspergers autism same time as Mother diagnosed with Cancer.  Family issues with siblings, so I am not surprised I am where I am and I think it is all taking its grip right now.  But hey thanks for being there (all of you), and letting me get some of it out in the open.

Tx

10

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

 

11

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

12

Thankyou nanettesea; that is very loving and helpful.....states all that any of us would offer to anyone, and especially to those of us who are ALL feeling like Tina....for I was going to answer that "Yes", this can be me, too, and has been for some years, since slowly deteriorating, but knowing that most of this has been to extra stress that is put our way, by others, and that we have No control over...life just keeps throwing us issues, and the only way that I can survive these emotions, is just Stop, think of me, and then get back on track.........Bron

13

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

14

Morning Tina;    don't forget to keep in contact, letting us know how you get on at dr's:  also we Do all need each other, so yes we are all friends in this together........Bron

15

Hi Bronwyn,

Thanks for this.  Yes I am off to the G.P tommorow afternoon will keep you all posted.  I have just been contacted by my local M.E group, the organiser keeps me updated by email as I unfortunately have never made a meeting as they meet once a month and I have always been too ill on that said day.  Anyway, CFS/ME association for our area which is basically 30 miles away, are running this NLP programming and apparently there are going to people running groups who have overcome M.E.  I think it is getting a very sceptical view locally.  I have just smiled to myself as the lady who runs the local group once a month, states the obvious "how on earth are we to get there in the first place".  I want to know how you can plan to attend such a meeting when you don't know day to day, hour to hour how you are going to be.  As I said I have had to cancel doctor, dentist appointments at the last minute because I have come over feeling very ill and not been able to get out the house. 

Tx

16

Morning Tina; yes to this statement, too.......I have had to cancel appts (even my necessary ones, such as physio, as too exhausted/painful to get there, even though I Know I Need it).............last night I had to decline an invite to a wedding of a very special girl who I have known since my youngest son was at school....she is like my daughter, but as it is in Sydney, and would need the whole weekend to get there and back, was just too much for me.   I feel so bad at having to do this, and sad too.....but don't/can't just do it.............I still hope that One day, someone, will give us our lives back......................xxBron

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I hope so, too, but being 75 already, my time is getting limited. The exhaustion seems to get worse with age, although my sleeping is so much improved with a vpap and Xyrem, (sodium oxybate). 

I try to get out of the house daily, I have classes and a litttle dog to walk. Some days just getting out of bed and dressed is too much, and I put a kaftan over my nightgown and go. Don't tell anyone! Hope things will look up for us who have lost so much from fibro.

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Hi Abot;yes I can understand your "feeling down"....and agree that with our age increasing, our energy decreases/condition/s increase.....(was that a mind-boggler?).......sorry.....but yes, even I compare myself to others of 58 and feel at least 10 years older....and know many of my friends who are in your age bracket, and have more energy than I do.....so am fully empathetic to you......but am proud that you have classes and are walking your dog.....and "who cares if you have kaftan over nightie"......at least if you have a "break-down" and need a trip in an ambulance you have the right attire on (underneath).....sorry if that is too off the mark of hilarity....but as said, am proud of you for not giving up......what classes do you have/studying?   I was talking to another lady who is doing what sounds like our "Training and Assessment", and have been thinking of trying to do something similar (for if I could get through that, I may be able to get at least a couple of hours work a week).............thankyou for joining (I don't know if I have met you yet)...but you will have a Lot to offer us younger ones...............​Bron

19

had cfs for many years, recently tried souvenaid which is a vitamin

recommended supplement for those with Alzheimers,

available online, ordered through local chemist, not cheap

around £14 for four small bottles, you need to try for at least ten days,

this IS NOT a cure, but helps me feel better, which if you push

yourself will end up going back to square one,

also try blackberries available from supermarkets again a

vitamin which might help.

NHS workers whilst recommending this for alzheimer sufferers

do not say this will improve your situation, but those who come

off medication /supplements are known to deteriate in their

condition,