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medicmurphy

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DX FIBRO
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Can
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Alberta
Hello folks,

I'm new on this forum. Primarily because I think after 26 years I have hit the perverbial wall mentally. It's hard to explain and I'm wondering if the Fibro community will understand. Emotionally I am still coping. Physically I have become so accustomed to feeling like a pile of poo :razz: However, mentally speaking I am so tired of thinking, trouble shooting, problem solving, picking and choosing what I 'need' to do verses what I 'want' to do every day. For example, I had a small dinner party this last Saturday. I had to pre plan for days prior in order to make it through the evening, (past experience; I've crashed and needed to go to bed during a visit :-(). Two days later I'm beat. Whole body pain, headache, nerve pain etc. My brain is mush. These experiences are heart breaking. I was a social butterfly and worked both a full time job AND part time job just a few years ago. Now my mental status does me in.

My question is....Does anyone else know what I'm talking about???
 

Birgitb

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Feb 15, 2017
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Diagnosis
00/0000
Country
AU
State
NSW
I just read this and thought I was reading about myself. I am seeing my GP this afternoon to get an official diagnosis after blood tests yesterday for inflammation (they came back negative). Having said that the way you have described your life at the moment is very similar to mine. I just want to get into bed and stay there at the momemt. I feel sorry for my husband we are both retired although I have until this year worked as a subsitite teacher in a wonderful girls high school, I loved my job but since the beginning of the school year I have had to refuse any work as I feel so depleted. I get out of bed in the morning and feel like I m 80 not 67. My GP wants me to come in this afternoon for a management plan. I hope she has some positive suggestions. So Medicmurphy my commiserations I hope you feel better soon. If my GP comes up with anything earth shattering I will let you know.
 

medicmurphy

Senior member
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Messages
205
Reason
DX FIBRO
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Country
Can
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That would be awesome if you can share. Like you I cld stay in bed. This response is not 'me'. Even when I fight a flue or bronchitis (I have chronic Bronchitis), I will not stay in bed. In the end it messes with my already dysfunctional sleep cycle. So, to find myself fighting to stay in bed is a foreign issue for me. I'm concluding I'm mentally tired. I guess I need to hear I'm not alone in this fight. I tend to label myself as lazy. Which I feel deep inside I'm not, given my work history alone. I'm a critical care Paramedic. Used to shift work and thinking on my feet.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
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DX FIBRO
Diagnosis
01/2008
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UK
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anywhere
I think this illness often hits the most hard working conscientious people ..i too had a great career high responsibility thinking fast and problem solving....then fibro struck after several protracted emotionally hard times .....i somehow came to terms with my new limitations although i often woke feeling like i had been run over by a truck but also had some better days..like you say almost normal for a few hours provided i stopped when i needed to stop and accepted that all activity would provoke pain.

IT wears our mind to a frazzle keep measuring everything we do and grieving for what we cant and at the same putting a brave face on it for the people we love and also want to care for and live as normal a life as possible for their sake too.

I was doing my best much as you 2 lovely people describe trying my best going out when i could and making lovely times at home for family..then maybe crashing so i could barely make it up the stairs etc.

Then my partner had a' poor me' episode out of the blue after a very rare argument and managed to turn his bad behaviour on me by rubbishing my health to a pretty shocking degree....when i knew i was doing brilliantly dealing with this condition and long story short my almost perfect relationship as i though ended up with him going off in a huff and not letting me know where he was for 4 days and nights.

The trauma it caused me both at the time and after as there was more too private to go into on a forum sent my fibro spiralling and i never recovered properly ever again..as the symptoms increased so did my stress levels and my partner no longer felt reliable or trustworthy as he had cheated many years before that had taken all my emotional strength to forgive and try and trust him again to be kind and safe and reliable.

So this second big upset had a bigger impact than maybe for some who hadn't already had trust issues not just about fidelity but trust as in someone who cares about your well being...especially with fibro to try and control.

Many new symptoms joined in and my condition went from 3 or 4 days out together for a few hours each week having a gentle walk or nice lunch in the countryside to me barely being able to walk and from managing all my housework albeit slower and in chunks to hardly being able to manage a shower and staying in my pjs because my body hurt so bad all the time and bed and hwbs became my BF's.

I would never have believed this huge permanent change or flare was possible...but i am proof it is..i have tried everything but nothing will bring back the stamina or good hours/days i had.

So please all take good care of yourselves..i dont want another single persons life totally wrecked like mine. I am still in shock almost 3 years later than one minute i was out and about and managing my condition and that was hard enough and draining at times..but i still had lots of laughs fun and as much activity as possible and next i am stuck like this feeling 90 and my life in pieces and have barely been well enough to leave the house and have too many new severe symptoms to list.
 
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medicmurphy

Senior member
Joined
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Messages
205
Reason
DX FIBRO
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Country
Can
State
Alberta
Dear willow,

Thank you so very much for sharing your story. This is very brave of you. You come across as a sensitive heart hence I am not surprised some of the emotional trauma you experienced flared the FM. Living with such a wide variety of symptoms without a doubt challenges us mentally and emotionally. In some ways I find these by products more difficult as it impacts our stamina and motivation.
The trick is to figure out our limitations and how to effectively balance out our life. Once we do this, we can perhaps salvage a quality of life. Sending you hugs willow. I feel your pain both physically and in my heart.
 

vickythecat

Senior member
Joined
Jan 5, 2017
Messages
364
Reason
DX FIBRO
Diagnosis
01/2013
Country
EU
State
Earth
A thank you from me too, for sharing your story. (and if I may, I will use the phrase 'feeling like a pile of poo' as well!)

The mental aspect is also for me by far the worst. Like you, I was born to work hard, to be passionate, to live life fully, grasp every feeling, experience etc. But now...with that all of that is gone. That person is there somewhere deep down, and it awakens once in a while to be faced with disI have no job. I am also no longer the activist I used to. This was a huge blow to who I am, to what makes me me, why I woke up in the morning etc.

A counselor recently told me that it is important for me to grieve for the person I no longer am. This is the sad reality of our chronic illness. I don't know whether the 5 stages of grief also apply to our 'self', but with me, acceptance often helps. As much as I can, I try to just go 'oh well....', huff and puff and find a positive. Like 'oh well....at least I can still enjoy a nice cup of tea'. Or if it is a bad moment 'Oh well...huff puff...*poo* happens'. But it is difficult, and will always stay that way. (acceptance, again)
 

MariaC

New member
Joined
Feb 23, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
06/2009
Country
Can
State
Quebec
I'm 55 going on 56 and have been diagnosed since 2009. Prior to this I lost my hearing in my left ear over supper one nite (I still remember the exact moment, date and time) While i was being tested for everything under the sun i was also told that I had hypothyroidism. This was in 2005! Let's just say that my life has changed drastically since then. I understand exactly what you are going through as I have always lived my life like I was invincible and I only dream of those days now! I will not let this get the best of me as I know I have many more great years ahead! You will probably hate what I have to say next, but what keeps me ploughing through is that there are so many more debilitating and terminal diseases out there. Yes, I know we shouldn't compare ourselves to others but I count myself lucky and grateful everyday that this is not degenerative! Obviously fibro is not easy to live with but we are still living :) I have seen so many people I love fight diseases only to succumb to them that I can only be gratefully for my simple pain!!?!! I love life and it sounds like you do as well! I also love to entertain and I refuse to give it all up! I don't know if it's the same with you but I have months that are better than others so I plan my parties strategically in those months, I make sure I have enough recuperating time where I have nothing scheduled in the week prior and following. I enjoy entertaining so much that it gives me enough pleasure to endure the rest ;-) Thankfully my hubby is very understanding and likes entertaining as much as I do so he gives me some space to recover. I know he doesn't fully understand but he does see the agony!!! Don't lose hope or your love for life. I haven't been dealing with the pain as long as you have so I'm not sure I am equipped to give any advice but don't lose yourself:) it's so easy to give in and give up but if we do we only lose more of who we used to be! I keep telling myself that it's only pain, nothing I do or don't do will change that. So if I have to feel pain it may as well be for a damn GOOD reason!!!
 

medicmurphy

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Joined
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Messages
205
Reason
DX FIBRO
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00/0000
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Can
State
Alberta
MariaC,

Thank you for your insight and wise reasoning. I agree with you. Our condition is not terminal and like you, I remind myself frequently of this very fact. It helps me to put matters into perspective as well as prevents me from feeling sorry for myself. I love life and for the most part I'm a happy person. Thankfully I'm not depressed which is why I started this thread and see if others like me can feel mentally tired yet not be emotionally tired or depressed. I like your reasoning that we will always fight pain. It won't kill us thankfully, but we just have to accept it will always rear its ugly head. Good thought!!
 

Krishna

Member
Joined
Sep 25, 2013
Messages
16
Reason
DX FIBRO
Diagnosis
02/2013
Country
ZAF
State
KZN
Hi Guys, I know the feeling all to well. I am a 35 year old male from South Africa. I have been diagnosed with Fibromyalgia 4 years ago. My life has been turned upside down. I am an accountant and fraud examiner, but I too find I have hit a mental wall. I can't concentrate on work like I used to and its difficult to get work done. |
its like my brain does not want to think and calculate or analyze.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
That's hard Krishna trying to carry on a demanding job of that nature..i worked in a field that required quick thinking calculations and decision making..i think coping with pain and fatigue all the time overloads our brains and causes the fog and mental wall of keeping going means many of us cant work..so hats off to you!
 

BunBun34

New member
Joined
Mar 6, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
Nevada
I appreciate reading everyone's experiences and insight. I just joined this forum as I'm finally admitting I have fibro and recognize the toll it had taken on my life. I would disagree to an extent that it's not degenerative as that term to me implies a worsening of a condition. My pain and fatigue are increasing, as my ability to complete normal everyday tasks are decreasing. It may not be what kills my body, but it's quickly now taking my mind and quality of life. My baseline is now at least 50% of what I used to be with severe flares at least 2-3xa month. I have so many neuro symptoms now, they outweigh the pain at times. I find it a coincidence too that I also work in healthcare. I'm directly evaluating and treating pt's all day and that certainly doesn't help the fibro. Im trying to find a balance, but end up barely even getting the essentials done. I'm also a single mom of a 6 year old half the time. It's hard explaining to people why I just can't do certain things. Someone said " well at least you have youth on your side", " imagine having all those things and being old". I'm thinking "fibro stole my youth, my joy in motherhood" and I'm expected to do what " young" people do. Career, family, friends etc. I do have a hope and faith, that's the only thing that keeps me going. And my little guy. There's some twisted comfort in knowing that I'm not the only one.
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Most definitly. Remember, "normals just a setting on your dryer".
On days. IM emotionally drained, I sleep more. I personally think , like my body, my brain gets tired too. So on those days when Im feeling a bit better with pain, I give my brain a break and rest "it". Commenly refered as brain fog. Dont fight it, just rest if you can. Personally, Im not working so I have that option.
Blessings your way.
 
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