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Coping with being alone
7 Replies
Roushy - August 24

Hi everyone, I have been diagnosed with Fibromyalgia about 5 months ago. Previously I had surgery on my back to remove a herniated disk. The surgery did not help at all and I still suffer from constant back pain along with have had this condition for 4 years now. Slowly I have noticed that different parts of my body would hurt. I felt exhausted all the time and had problems sleeping at night. My right hip would hurt when I lay on it and there were days were my body would feel like I had gotten hit by a truck. My doctor referred me to another doctor and he was the one that diagnosed me with having fibro.
Before this and before my back surgery I was a very active person. I'm a single mom and would always be on the go with my son. I worked M-F so on the weekends we were never home. He has had to cope with Mom not being able to do what she used to. It has been a hard transition for him as well as me. I was in a relationship for 3 years that just recently came to an end. My partner could no longer handle being with me because of my fibro. I don't hold it against them. I can understand how difficult it is to see the one you love in pain and not be able to do anything to help them. I guess i'm just wondering if there really is love out there that can conquer it all. I look at my future and think that I am in this for the long run by myself. Everyone talks about how hard it is to have friends.....omg is that true. Being exhausted does not allow time for chit chat on the phone with friends that can go anywhere when they want and do whatever they want at any given moment. I am starting to think that not only is keeping friends going to be hard, but meeting someone new is also going to be hard. I am a very private person and I don't usually just tell people my illness. I try to hide it as long as I can...I don't want people to treat me any different. Will this ever get any easier? For those of you that were single and met someone to be with is your relationship strained? How does having Fibro interefere with your personal life and what do you do to try to live a life that is somewhat fullfilling. Any advice or help would be great.

 

Jocelyn - August 25

Hi Roushy,

I'm sure there are many people on this site that are alone, I know a couple, and have had, difficulty with relationships, but have found ways around it. I am married with grown children. Although, I had Fibr and Sjogren's for a long time, I was lucky enough to get through my kids growing up years. However, I am finding it difficult to have my Grandson over or just to take him anywhere because I have been so tired.

Everyone with Fibro is different. I have had some very bad years, and then I am now having a better year, yet I am more fatigued. Go figure. My husband had a difficult time understanding what was going on with me, but he is good about it now.

I have found that physical therapy for the hips, which include deep muscle massage and laser treatment have helped me out immensely, however, everyone is so different. Gluten Fee diet is a help too. Anything that helps keep the inflammation down for me helps. I do get do have a high sedimate rate, so I have inflammation in my body. Oh well.

Let me know how you are doing.

 

January - August 26

Hi Roushy - I relate to your story. I was a super-doer, and always taking care of other people - until this disease took me down. I've had it for almost 2 decades. Like you, I have back problems too, so it's complicated, and I was very sick for a long time until I took control of things and found treatments to help myself. The doctors didn't figure it out, I did. So YOU will be your own best advocate, learn all you can and try different things to see what helps you. But I think you are really asking about the isolating part of this disease…

I think it's a blessing and a curse. I was upfront from the start that I had fibromyalgia, and I explained it to anyone who would listen. But because I looked alright, nobody "got it." They kept forgetting I had an illness. Then, for a while, due to some medication, I had trouble with balance, and I got a snazzy looking cane - suddenly people were more understanding when I had the cane! But others really avoided me because of it. People have different ideas about "disability" - it makes some folks very anxious, afraid of their own mortality. However, there are more enlightened and educated people who are fine about being friends with you, even if you have some kind of illness. Eventually, most of us will get something! You just have to separate the wheat from the chaff.

It was very hurtful adjusting to being chronically ill, because not many of the "friends" that I had really helped out bothered to return the favors when I got sick, especially as more time went by - but a few good friends stuck with me! My family was never supportive. SO, it clarified the truth on who cared about me! It was tough to accept that the number was smaller than I thought, but now I think it was a blessing - I don't waste my time on people who don't care about me! I guess a lot of people I thought were good friends were only hanging around me to get what they could get. Good riddance!

As for having relationships, it does get harder to meet new people because you just don't have the energy to go out. (Maybe that's aging, not fibro!) Still, if you can get out a little, you can meet people. My personal opinion is that it's better to be yourself and be honest about having some medical issues up front. That way, the self-centered jerks will leave right away and you won't get your heart broken later! There is nothing to be ashamed of. Lots of people have diseases and you can't tell by looking at them. All you have to say is "I have fibromyalgia, so sometimes I tire out easily. Aside from that, I'm normal!" Something like that… you'll find out soon enough if they are interested.

I have friends with serious medical problems who are outgoing. They stay attractive and keep a pleasant attitude, and they have no shortage of guys to date - nice looking guys too! One friend, in a wheelchair for many years, told me that she thought men were attracted to her because they wanted to take care of her. She's a strong, independent woman too! Anyway, she's been happily married for many years now - so I think it's your attitude more than your medical status! Focus on the good parts of your personality - I'm sure you have a lot to offer, even if you have fibromyalgia and feel crummy sometimes….?

 

Roushy - August 26

Jocelyn,
Thank you so much for responding. I will definately give what you said about therapy and gluten free diet a try. I will try anything at all that will help to make me feel a little better. I can relate to having a hard time going out and doing things. If I can talk myself into leaving the house and going to do something with my son....i then worse for a couple of days.

Thanks again for the respons.

 

Roushy - August 26

Hi January,

Thank you for taking time out of your day to respond to my post. I think you hit the bulls eye when you say I need to be upfront with everyone. I know I should be but everyone still looks at me like I am still the go getter like I used to be. I know I shouldn't worry about what others think, I am such a people pleaser that I find it hard to want to tell them I can't do things or go places. I find that avoidance right now is my friend and I know I have to get over that.

I think I am going to turn what you said about "it's your attitude more than your medical status" into my motto. That hits home to me more anything.

It feels good to know that there are others out there that are going through what I am going through. Depression set in kinda hard because I was having a hard time dealing with not being able to work and not having the energy to do anything. Finally that is starting to get under control. I just have to learn how to pace myself and do little things each day instead of trying to get them all done in one day and suffer for the next few days.

Thanks soo much January for my new motto. It's my attitude more than my medical status!

 

January - August 28

Hi roushy, you made my day! It makes me smile to know I helped a little. I also want to reiterate that Jocelyn is right about trying things like massage and acupuncture too. I think she's better than I am about staying active - you should try if you can. The gluten free diet helped me a LOT (I know the feeling of being hit by a truck, and that is completely gone, as long as I stay gluten free!) Jocelyn mentioned the lasers, and when I get my rear in gear I am going to ask my dr. about that. I have the back pain too, but there's not much anyone can do about that - I refuse surgery because I don't know anyone who has been helped by it.

I think a lot of us used to be "go-getters." We've had discussions about it - seems to be the "fibro personality type!" We burned ourselves out because we probably pushed ourselves harder than most people to accomplish more - and take care of everyone else too! Losing all that is kind of depressing - there's some grieving you have to go through, because you aren't the same any more. You've lost part of your life. So you have to find other things that fit your new life and make you happy. The silver lining, I think, is coming to an understanding that my worth is not based on how much I can accomplish or how much I can do for other people. I have worth based on everything I've already done, and now my worth is based on who I am. There are people out there who will appreciate you.

I know how hard it is to get people to understand that you just can't do things anymore. When I got diagnosed I kept pushing myself ("I'm gonna beat this!"), and I looked fine on the outside. Once I went on vacation with very active people - half way through, I collapsed - and slept for 2 days. They were NOT understanding. Never seen anything like it. Well, neither had I! But that's when I realized how different things were going to be. You just have to keep educating others, keep repeating it to people "I know I look fine on the outside, but I have fibromyalgia. It makes me tire out fast, it hurts a lot, so please understand - I'm not avoiding you, but I have to pace myself." or "I need to take some time off now and sit down/rest/go home. Don't take it personally." If YOU are comfortable about it, others will be too. And don't forget, when you have friends who ARE understanding, give them a pat on the back and say thanks for being there. I recently got invited to a party by some new people, and had to explain that I never know how I'm going to feel on any given day until I wake up that day - I said if I could make it I'd definitely be there, but if I didn't show up it was because I was having a painful day. They were so nice about it - and I found out one of them has some "invisible" medical issues too!

Hope you soon find things that will help you feel better! Take good care of yourself. : )

 

Jocelyn - August 30

We all know how had this disease is. People don't understand and it is hard sometimes to keep the chin up.

I do exercise in the summer a lot by swimming and doing lots of stretching in the pool, but my pool is heated, nice and toasty like a hot tub. Most people don't have that, and I only have it during summer months and then I go back to the problems with doing the exercises on the floor and that does cause me pain. The pool keeps the inflammation down in my legs, which I think is from connective tissue issues, not yet diagnosed. However, walking the dog causes the tissue to become inflammed. Not sure how I am goint to handle this winter. Summer is ending and I am actually exhaused. I'm not sure why, just can't shake it. I do get fatigued, but it usually only last a few day, but this time, it has been weeks.

I'm just going to keep on trudging like everyone else.

Keep me posted.

January, pretty soon your company will be here!

 

MsAndrea77 - September 1

Thanks everyone for posting and sharing in here. Roushy I can relate to how you feel- I am a single mum to an 8 year old boy- I was only diagnosed about a month ago but having read up on FM I realise I've had this for years. My son is used to hearing me saying "Mummy needs to rest now, mummy is very tired." but it doesn't make the guilt less of not being able to do a lot of activities with my son.

I've been blessed to find a good doctor who specializes in FM and the first thing she did was get me on Gluten Free and Dairy Free diet. It's expensive and I have to plan my meals ahead of time so as to avoid getting stuck without something all ready prepared, but I've noticed there's been an improvement over the month. I was starting to feel almost 'normal'- not having to nap during the day, cleared minded- I wouldn't say I was full of energy and back to my active self but def. feeling better emotionally and able to get a few things done if I paced myself and took breaks in between- but last week my son, who recently had surgery, had complications from the surgery and we've been in hospital all week. About after the second day the fatigue, muscular pain and swelling in my legs came back (do you guys get that? my ankles and legs are like balloons sometimes!!).
I figure what goes up must come down- so while I am back to being in exhausted agony, somewhere in the future there will be a habor time in normalcy again.
Have you guys read up on fatigue management? A friend who is an Occupational Therapist mentioned it to me- I haven't read on it yet but I think it might have suggestion on how to best work around the fatigue issues. Like you ladies, I was superwoman before all this kicked in- actually, I think I still am superwoman!! haha- its just superwoman in slow motion now!!! I've been finding breaking up tasks into little steps- and having a rest in between doing things- helps a lot- even if it is something like washing the dishes- I fill the sink, start on the culterly, take a break, go back later, go the glasses and and so forth- it might take longer and I may have to put more hot water in the sink, but at least I can get it done that way- and even if I am only doing the dishes every few days its not the end of the world.
Other big help I've found is using a slow cooker (I think you American guys call them crock pots- I'm Australian:-). I used to have a really big one to feed a whole family, but I found it was too big- so I got one that is just 1.5 liters, just enough for my son and I and a meal left over for lunch the next day. I tend to have more energy at the start of the day, so I put my meat and vegies and gluten free casserole base in the pot at that time- and then turn it on around 2pm so when I get home around 6pm its ready to eat, usually I just boil up some rice in the microwave and we've got a nice warm dinner. I've found even though gluten free food can be expensive, it works out the same when compared to the amount of money I would spend on take out as I've been too tired to cook.

I understand the loneliness of being sick- I like the suggestions about letting people know I tire out easily and also just trying to make an effort to get out more but knowing when its time to go home. I've only just starting letting friends know what been happening as I've been too sick to communicate- I've sent text messages out and seen few people in person. Everyone is like "Why didn't you let me know? I'm only a phone call away." I've tried to explain the exhaustion has been so severe that even using energy to try to phone someone and talk is too much but I don't think they quite get it. Oh well.

thanks everyone for sharing and also for reading posts- I think these forums do a lot to help with the loneliness and isolation of Fibro.,

take care,
MsAndrea

 

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