Sick of myself!

[hwalker376]

Hi
I have never used forums but came to this as i really need someone to talk to who knows what I'm going through!
I am 36 and was diagnosed with FM around 6 months ago after years of pain, tears, tests etc. I'm really struggling right now with my mental health due to being in pain all the time, and am struggling to tell my family how I'm actually feeling. I'm so sick of answering the question "are you ok?" when all i can say is that I'm tired or that I'm in pain. I'm sick of listening to the same words come out of my mouth, sick of being fobbed off by doctors, sick of feeling ill all the time, sick of struggling to complete simple tasks.
To be honest i feel completely lost!
My family and fiends are amazing and so supportive but i just cant keep bringing everyone down with me and I'm sure they are all getting fed up of me complaining. Even writing this now i feel guilty and self centred. I have never been one for self pity and have always found it difficult to open up and yet here i am spilling my guts to complete strangers.
I don't even know what i want to achieve from writing this but i think just getting this off my chest without the looks of pity is a start.
Does it ever get easier?

 

[sunkacola]

Hi @hwalker376 .

FIRST------do not ever feel guilty or selfish or any other negative thing about posting here.
Not only do we understand and want to support you but also, we all complain sometimes. We even have a whole section of the forum for complaining and moaning, but no one cares if you complain in other sections of the forum as well. We all do. That's one of the many reasons to have a forum like this one. So, feel free, and feel welcome to be here.

Second --dealing with family/friends/colleagues is one of the toughest things we all face. We've all been there. We can not only sympathize, we can offer ideas if you want advice.

What I usually say is-, first, don't expect anyone ever to actually understand unless they have experienced something similar. It's just not possible for people to imagine what it's like. If you expect them to understand you are only setting yourself up for disappointment and frustration.

So, instead, set reasoned expectations. You have the right to expect people to believe you. Anyone who chooses not to want to believe you doesn't need to be in your life.
You have the right to be treated with respect. Anyone who wants to make fun of you or harass you or get mad at you if you need to change plans because you feel awful when the day comes doesn't need to be in your life.

Basically, you have the right to expect the people around you not to make things worse for you. some may be helpful, some may not. And you cannot expect everyone to be helpful. But no one has the right to make your life worse or harder than it already is and if they persist in doing so, it is more healthy to stay away from them.

Finally, if your friends and family are supportive, just be grateful. They don't want you to feel guilty.
And if you are afraid of wearing people out with complaining, try this. It's what I do, because I am like you and never, ever want to complain or be selfish or burden anyone.

I will say, (and of course you don't want to do this too often.....) "May I have ten minutes just to moan and complain, please?" Making sure the person knows it's totally OK if they say, "No, not right now". That way, they have an out if they are too tired or feel their own lives are too hard right now to listen.

If they say yes...I set a timer. Then I can moan and complain all I like for 10 minutes. But when the timer goes off, that's it. I shut up. Middle of a sentence....it doesn't matter, I just stop. Ten minutes is plenty. Five can be enough.

Be happy you have what you have. Many of us would just about give anything to have supportive family members.

And any questions you have, let us know.

Does it get easier? Yes, it definitely can. But in order for that to happen you have to do a bit of work. Not all at once, but you need to do it.
First, find out through your own experimentation what things in your life help and what doesn't, and do what helps. Second, start working on Radical Acceptance. The degree to which you can simply accept your situation is the degree to which you can have peace. Acceptance doesn't mean apathy or approval. Doesn't mean you won't do what you can to help yourself and make things better. It just means you accept the reality of the moment and you are not fighting with yourself or in denial or saying "this shouldn't be happening", or going on a "why me?" sort of journey, all of which will only drain your energy and none of which will help you.

I hope you find it helpful to be here.

 

[johnsalmon]

as we say in Australia -= join the mob
most of us have the same feelings now and then (more now then then) when I feel the same I tend to retreat to my little computer and radio room away from family members over time they realise that it is sign that my Fibro and or my essential tremor has got too much for me and if asked I usually say "I'll survive" because it is too complex to try to explain to them. I did buy a good book on fibromyalgia and essential tremor for the bookshelf for them to read.

I am lucky that I have a very good doctor who has an interest in fibromyalgia.
There is a post on this forum I think its called "how are you today" where you can vent your pain etc and writing about it does help and find a "safe" place where you can relax could be a room or beside a tree some place that is special to YOU they say music has the power to heal - in fact it does not but it can change your mood and make you relax Pain is worst when you fight it.

f you Doctor is not giving you satisfaction in pain relief then find another doctor

 

[hwalker376]

Thankyou @sunkacola . I think i very much got into a state of waiting for a good day and being disappointed when one didn't arrive lol. I will try asking for 10 in the future and have started to cut out sugar slowly. I know i just need to be patient with myself and take each day as it comes. I think I'm just finding it hard knowing that this is my life now. Thankyou for welcoming me

 

[hwalker376]

@johnsalmon My doctors have been rubbish and I've had to push for tests etc, but they have finally referred me to the pain clinic so fingers crossed they can help me with a change of pain killers.
Its good to know that feeling like this is normal (not that i would wish this on anyone) but knowing I'm not alone is comforting. Thankyou for your reply and welcoming me

 

[SBee]

Hello @hwalker376

Just wanted to say hello and echo what @sunkacola and @johnsalmon say.
I was diagnosed with fibro in December at an NHS pain clinic after a couple of years of unexplained symptoms and did find it useful. The GP there was looking more at lifestyle changes rather than meds which was helpful in that it helped me listen more to my body.

Personally I find it a slow, and ongoing process to accept this probably won't go away. And that meds may help some from a symptom point of view, learning how to live with fibromyalgia, to work with it rather than against it is the key. This is not to say it's easy - you will often find me on the venting thread. Please try not to beat yourself up with how you feel -anyone on here understands it can be overwhelming and a ton of emotions come into play. We all find what works best for us,even with very fluctuating range of symptoms.

Definitely find a more understanding GP. Took me a while but I found one I trust. To be brutally honest, I find it hard for even the closest of people around me to try to grasp how ill we can feel on a daily basis. Mostly I try to explain the chronic fatigue side, people generally get that bit.

Shout and vent as much as you need - I will probably ' meet you ' in that section at some point.

 

[sunkacola]

Thankyou @sunkacola . I think i very much got into a state of waiting for a good day and being disappointed when one didn't arrive lol. I will try asking for 10 in the future and have started to cut out sugar slowly. I know i just need to be patient with myself and take each day as it comes. I think I'm just finding it hard knowing that this is my life now. Thankyou for welcoming me

Good for you, for changing your diet to a more healthy one! This is a very important thing. You may not find that eating the most healthy diet you possibly can will eliminate pain (it hasn't for most of us), but the more healthy you can get your whole body, through proper diet and exercise and everything else, the better able your body and your mind will be to handle the symptoms of fibromyalgia.

Also, I hope that the docs at the pain clinic can help you. At the same time, I do want to insert just a gentle word of caution: Try not to depend on medication to take care of yourself, or the doctor(s) to help you. Many of us do need pain medication, at least some of the time, and that's a personal choice. But taking care of yourself is multi-faceted. The more you can do to be healthy, the less you may absolutely need the pain medication. It's worth a try, anyway.

 

[SBee]

@hwalker376

I have just been listening to the BBC presenter Kirsty Young, on the BBC app, she has fibromyalgia and rheumatoid arthritis and is being interviewed about what it's really like about living with these conditions and chronic pain.
It's only a half hour programme, so not to taxing to concentrate on, but it may be worth a listen. She speaks about the physical side of the condition, how she feels emotionally and mentally, and just really nails it in some ways.

It's kind of reaffirming for me to actually hear someone who experiences the same things we do, being voiced aloud by another person. I don't do apps or podcasts, am not a techy person but I found this a well balanced and honest programme.

 

[hwalker376]

thankyou @SBee i will have a listen

 

[Sueb24]

Hi Sarah, I listened to that one too a little while ago. It makes it all so much more ‘real’ to hear someone with ‘a voice’ telling their story of trying to figure out what’s wrong and then get some treatment that works. I think she said it took her four years to get back to being able to do another news piece on air didn’t she? The Queen’s funeral I believe it was.

 

[SBee]

Hi @Sueb24 I found her interview refreshing in its plain talking. It resonates with me when she spoke of ' losing herself ' due to the impact of the conditions and symptoms. something I am sure many ( all?) of us feel until we begin to accept these conditions as actually being part of who we are now,and then how to find the best ways to help ourselves as individuals.

I did find it almost ' validating' fibromyalgia in that a well known person will speak candidly about a condition that some still do not accept as real - she even had one Dr tell her fibromyalgia doesn't exist, that it'sa word used to almost appease a person with multiple unexplained symptoms.

I do remember her suddenly standing down from radio presenting. I didn't know she covered the queens funeral.

I think this interview had a following part from medical professional s about living with chronic pain so am need to catch up on that part too. If my no tech brain can find it.

 

[Badger]

It would be helpful to hear more sufferers who are in the public eye talking about living with Fibro.

 

[sunkacola]

she even had one Dr tell her fibromyalgia doesn't exist, that it'sa word used to almost appease a person with multiple unexplained symptoms.

......and isn't this just laughably ridiculous? Seeing as how, fibromyalgia IS a syndrome that is characterized by a person having multiple unexplained symptoms?

That's like saying that Diabetes doesn't exist....it's just a word used to appease people who have dysregulated insulin levels.

 

[Buckle]

I understand what you are saying. I got sick of hearing myself, as well.
Got tired of hearing, "are you okay" When all you want to say is "No. Have you not been hearing me?!" lol....But they have, they just don't know what to say or how they can make it better. So, now, I respond more with: "dealing with a flare today!" They drop it after that usually. Then we talk about something else. Preferably something pleasant. My husband kept wanting to "fix" me. A problem? Let me fix it! lol... If only he could. I try to keep myself busy. I am retired now, so I definitely have to keep some sort of hobby or activity going, since I do not have work to talk about anymore. Keeps me focused on something pleasant.

 

[sunkacola]

@Buckle I find it hard to deal with people who want to "fix" me.
I mean, if they actually could that would be one thing. But they can't, and really, like you, I don't want to spend a bunch of time talking about it. One person wanted a report every day of what was hurting. No, thanks, I am not going to do that!

When someone says how are you and it's a bad day I just say, "hanging in there", or sometimes, "It's not a good day today, but so it goes", and then change the subject.

Talking about it doesn't help me, only makes me focus on it which makes it worse. Far better to talk about just about anything else.

What hobbies do you have, Buckle?
My hobby kinds of activities all got messed up due to the Pandemic and I have not really found any new ones, and I need to find some. Just curious what yours are (don't answer if this is personal).