DISCLAIMER: INCLUDES TALK OF POSSIBLE SELF HARM, SUICIDE AND A LONG WHINGE - SORRY BUT I NEED TO GET IT OUT. IF THIS IS INAPPROPRIATE, PLEASE FEEL FREE TO DELETE. THANK YOU.
I am lucky as I have the best husband, a wonderful Carer who is also a long term friend and a Step Mum, who doesn't really understand the condition and my other health conditions, but is always there and never judges me.
My Biological Mother also has many physical conditions including Fibro but I cannot talk to her about it as she just says to push through it. I have tried that but I am obviously not as strong a character as her.
I am in bed again after a busy day yesterday. I have an ongoing flare and I don't know when I wake up, if I sleep, what the day is going to bring.
I have a few hobbies that I am trying to hold onto however even those are getting harder to achieve. I want to make my time useful and fulfilling however I try and do something and then the next day the Pain Monster rears its ugly head and just goes and kicks my butt.
My husband and I have been together, on and off since 1994, and friends since 1990 and he has been by my side through a hysterectomy, my Dad dying of Cancer and now the Fibro, with all the additional issues that brings and Degenerative Disc Disease. We will have been married for 5 years this October and he has stuck by his wedding vows i had a hysterectomy at 28 after various miscarriages so i have no children. I now see this as a thankful thing as I would feel so guilty if my child had to be a Carer for me. The worst thing for him (and me) is a serious lack of sex life. I cannot have sex due to a buggered up hysterectomy which brought on Atrophy of the Vagina. Even getting aroused hurts. In 5 years we have had sex, or attempted to have sex, about 5 times but it always ends in tears and apologies from me and him feeling guilty for hurting me. Unfortunately there is nothing that can be done. I am on the highest dose of HRT which usually solves this problem. I don't know why he stays with me. He works 12 hour days and then has to come home to cooking, cleaning etc. He is my rock but he deserves better.
I am seeing a Psychologist fortnightly to help me through the mental issues that come with the physical issues and also to help me make sense of problems I had growing up.
I am 43 but my brain is still in its 20's and wants to go clubbing and to the pub and party all night however I find myself having to cancel arrangements time and time again as I just don't know how I am going to feel on a specific day.
Hence the title of this Blog. I have tried to kill myself and failed. I feel paranoid that people don't believe I am ill. I am one of the lucky ones in that I have a Blue Badge, however I feel I am being judged every time I get out of the car. If I had £5 for every look that says 'why is she parking there!' I would be a lot richer than I am! I try and use humour as that is how my Dad got through his Cancer but somedays even that doesn't work.
I am sure this will be read and there will be differing opinions however I am tired of just existing. I have tried to do the pacing and gentle exercise and coped better until a thoracic disc buggered up.
There isn't really an ending to this Blog entry but I just needed to write and get this out of my head. Thanks for allowing that.
I hope you are all having as good a day as possible.
Oh dear debbs, I'm so sorry you feel like this, don't apologize for how you feel it takes great courage to say what you said, I don't know what the answer is other than get to your doctor ASAP , there's always a way out, your husband loves you that's why he's with you although you can't see that at present, just get to the doctor and don't do anything stupid , they'll be a lot of sad people left, sorry if this is no use but you need more emotional help and you need it now
You are dealing with a lot of problems and i understand the struggle all to well,
It looks to me like you are strong and you are trying your best.
it also sounds like your husband really loves you and you deserve to be loved!
my advice to you is to carry on seeing your psychiatrist, ( i found CBT helped but hypnotherapy really helped me deal with the depression, accept that things have changed, and helped me realised that i needed to let a lot of the anger, frustration etc go
I would also stop worrying what others think, after all their opinion doesn't matter and it doesn't change your life in any way.
I know it is really hard to stay positive especially when everything hurts at once or it all happens at once.
One specialist told me to start doing things that make me happy, which I have started to do and although I have some really bad days i have good days to look forward too
Thanks Irene. I don't feel very strong at the moment however my Psychologist will be proud that instead of heading down the pile of pills decision, I decided to write it down. Xxx
hello debs I am so sorry that you are so sad I do think that writing things down does help please debs dont do anything to hurt yourself sweetheart I do agree with nicki you do need to see your GP take care love beth x
Thank you Beth for such a lovely reply. I am in tears of relief and gratitude at how supportive other sufferers are when they themselves are going through such bad times xx
Well done to you Debb on all your strength, not acting on self destructive feelings and speaking/ typing them out instead. Try not to be so hard on yourself and accept all the help you have available, you deserve it. Your husband clearly loves you too. x
For some mad reason he does. Maybe it is because of the chocolate I bribed him with?
Fibro may be an awful condition but if there is one upside, it is the support, kindness and understanding of others that are suffering. I am in tears here knowing that I am not alone and I am sure others are feeling the same way. Xxx
you are definatly not alone on this site, you can tell us anything, we all suffer every day, and between us we manage the pain best we can.....keep poping on here and we will cheer you up and give you the surport best we can.....and love to your cracking hubby, hes a star........take care .julie xxxxxxxx
Honey I hear ur pain but I'm sure ur hubby must love u......u've just got to believe u deserve that love....n accept that you are worthy x x
No one around me truly knows how bad I feel most days so I'm alone but still try n seek the positive side.....I realise everybody is different but Hun....if u harm urself those u've left behind will feel pain too....n maybe even guilt.....release urself n try to talk it out with ur hubby honey x x
I do my best to talk with my Hubby however he has admitted he doesn't understand Depression and he knows there is nothing he can physically do to help my pain. Between him and my Carer they keep me safe when I am on self destruct mode.
you are a strong woman, and should be proud of the fact that during this time you have recognised the systems of the depresion that comes continually (almost) with the fibro and typed your blog, that was a very positive thing to do. When reading your blog it discribed how I feel (most of the time). I use CBT a lot and find it useful. I have also stopped taking notice/listening to people that donot know how much pain I am in and give me negative vibes. It sounds as though you have people around you that love/care for you, I write notes to myself and pin them on cupboard doors or on my headboard to remind myself that I am loved and not thought to be a burden by the people that care for me. Keep having therapy, I found it really good being able to sort out/get rid of the emotional rubbish that I carried around for so long. Take care and any time you need to talk. Type away we are all here for you. Annxxxxx
Hi Ann. Unfortunately I was suffering from depression before the Fibro was diagnosed. The last straw being falling asleep at the wheel and having my Biological Mother screaming as we were going into the next lane. The Fibro etc has just added to it. I have a fantastic Psychologist. I wish I could let everyone see her as she is kind, funny, doesn't judge and is a great person.
Thanks for reply xx
hi i have d.d.d too and its soo not nice.im sorry how your feeling and theres seems to be a lot of us on here at moment that feel low or have feelings like you.
god i had those feelings last year many times but i got through it with support from my fella and thought my kids would hate me forever for doing it.although they dont live with me i just cant do it.
ive come to hope that i was in remission 3 years ago and lead a pretty normal life and i might again.i hope and pray and meditate.
i have a wonderful fella who cannot have kids and always wanted them.it does break my heart and hes talked about fostering if and when we get better and get jobs?
it might never happen but it keeps spirits up.
i agree with above and not ashamed i have regular therapy when im feeling like i need it.
my last therapist once said to me .
look if your ill you go to the doctors and he tries to fix it.well if your brain is ill then you go and get help and get it fixed.
i suffer on and off with depression but i get near the verge and ring my g.p and request therapy again.
i look forward to it as its a release and helps my partner from bearing the burden has he has same illness.
i also use c.b.t and meditation is very good.
sorry if im not helping?
have you tried also it wont change things but talking with a lawyer about your operation that clearly went wrong?
you clearly have grounds for it?im prob gonna get slated on here for saying that but being honest.
Bless you sweetheart , it is such a devastating illness - I'll be honest - I could not have believed life could be this painful before my onset. People who have never had it or been close to someone who has had it will never understand how strong 'we' have to be. We are all guilty of trying to look 'normal' when we manage to join the outside world. You have a loving family by your side and that in itself is a blessing. I have found that finding something that is simple and relaxing and can be picked up and put down as a hobby can sometimes ease the low mood. My simple pleasures are drawing and painting...(even though they look like a 5yr old did them) Little poems putting prose to your pain.. Alittle pottering in the garden , lightweight and fairweather only !! Most of all a lovely hot bath and pamper .. even on a small scale...little bits of self comfort. And the big thing is be absolutely PROUD of yourself for getting through each day..............I live alone with mine and I know just how hard this is and how down I can get.............xxxx Love to you I hope you feel a little improved soon xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You are DEFINITELY not alone in how you feel... I, too have a wonderful husband who also cares for me on every level but I've done everything I can to push him away recently as my fibro has escalated to a point of constant challenge. After years & years of problems (about 20 of our 35 together) he's still here... although like you I often wonder why! I think I'm now reaching a place of acceptance but still have dark days &, like you, have thought (& planned suicide).
I really feel for your situation but think that the replies above give all the advice you need - I just wanted to say, once again, that someone else identifies with how you feel. There are many many ways of expressing love so perhaps a investigate ways that work for you & your husband - even just being physically close while sharing music or a film together can be intimate & make you feel a partner rather than a taker. I'm sure your husband must feel this otherwise he wouldn't have remained such a loyal & constant source of love & support for you.
Take care of you & let yourself be loved & cared for.
I did once admit to my Hubby that I wanted to die. This was just before my mental breakdown of sorts last year and he said that he was proud of the fact that I had held out as long as I did. He says he doesn't think he would cope if in the same situation.
I have good days when I beat myself up for even contemplating suicide, especially as I have seen first hand the devastation it can cause. Then on my bad days, I try so hard and fight against the thoughts. I can no longer drive and I am on a self imposed suicide watch. I have a plan which in itself is scary to admit. But I am still here.
oh Bobbsta, you are not alone and never will be while you write to this site. here people know and understand and, importantly, share & care. no matter how hard things get, please remember we are here for you.
CBT allows you to talk to someone and not feel as if we are burdening them, it as helped me.
I have also spoken with the Samaritans - it doesn't have be suicidal thoughts to need to call them. I was in the depths of despair when I called them and they just sat quietly while I cried, then gently spoke with me.
I am glad that you can release the tears because they are healing. I once felt that if I "gave in"
to my grief I would never stop. But you do. Unexpressed emotions never go away.; they just wait until a moment when they can catch you unaware. I've cried watching tv or in the middle of a supermarket, whilst using the store scooter, mostly silent streaming tears, not realising until my t-shirt neck felt wet!
sending you [and your hubbie too] a huge gentle hug and a virtual bouquet of your favourite flowers. regrds, sandra.
Thank you to everyone who has replied. Much love and gentle hugs to you all xxxxxxx
Hi Debb, I too can identify with so much of what you say. I often ask my husband why he is still with me when he misses out on so much. He just smiles and jokes that he would miss my chili con carne if he left me We are blessesd to have OHs that love us. Can you imagine how devastated he and the others who love you would be if you did harm yourself. They would be left feeling that they had failed you.
I also would emphasise what Sandra (above) says about the Samaritans. Do give them a ring as they will be there for you day or night with a well trained, sympathetic ear as well as plenty of advice that you might find helpful (if you should want it).
Personally, I try not to think about the person I was before becoming ill, which always brings me down, but concentrate instead on the many things that can still bring me joy.
I hope that your angels keep you safe and that you soon begin to feel more positive.
We are all here for you and send you lots of virtual hugs to keep you warm.
It was Post Natal Depression that made me suicidal - thankfully I never did anything about it but there were a few tearful phone calls to the Samaritans once the kids were in bed and hubby#1 was "working late" (he was playing around but that is a whole different story).
I'd never underestimate how depression can scramble a rational brain - please seek help from Samaritans, your GP, counselling and/or a good friend.
You are stronger than you give yourself credit for. It was a state of mind in the war that you just get on with it, and I guess our parents got that attitude from their parents; they did have to harden their hearts to get through WW2 in many instances. BUT we are creatures of peacetime and of liberty, maybe we are a softer and gentler people - but that doesn't mean we are weak - it isn't weak to care after all. Don't let your Mother erode your self-confidence in your ability to get through all the things that have been thrown at you.
Your husband sounds like a total super-star; you are very fortunate indeed, please make sure you tell him how much you appreciate him won't you. I have an understanfing BF and he is so modest when I tell him how much I appreciate and love him! We are both very lucky with our men
Oh Debbs I can really really empathise with how you feel as I'm sure can many others on here. This cursed illness is so distructive and not only robbed us of our health and vitality but also our very identity.
Im so glad uve some lovely and supportive people around you please open up & let them help you and remember people make a choice to be part of our lives so dont feel like your holding you hubby back, he is exactly where he wants to be and that at this moment in time is with you. So appriciate what you can do together and remember you can have a fufiling lovelife without full penetrative sex and that intimacy and romance(kissing cuddling, holdin hands, partner massage, oral sex date night etc) can help to bond & cement your love for each other.
Depression frustration self harm and Suicidal thoughts & actions are also very common and wheter its due to childhood issues, living with a long term health condition or family problems etc there is always support out there. Having survived my own suicide attempt i would never judge those who seek to escape their problems in this way, but I can tell you im so glad im still here to experience life with all its ups and downs and having seen the hurt and bewilderment of family and friends as a result of my actions I would never want to visit that devastation upon them again.
Since my suicide attempt im not gonna lie; life has been a mixed bag, i still suffer pain & anxiety on a daily basis due to fibro, like everyone else the economic downturn has had a massive impact on my finances leading to worry & stress and as a carer to grown children with special needs (autism, epilepsy, personality disorder to name a few) im worn out trying to be all things to many people.
But on a positive note ive lived to get to know and have great fun with my two grandkids,
Made new friends through work, had the odd fling, enjoyed holidaying abroad, felt the sun on my face enjoyed getting soaked in the rain, listened to new music, watched shite tv, and danced sang, drank cold cocktails, read new books and loved& laughed.
Please look after yourself. get support when your down, talk and communicate with those who love you, dont let Issues from your past destroy ur present, try not to look to far into the future live life a day at a time and hopefully you will find reasons to keep fighting & living.
You are in my prayers and thoughs, may god lighten your load comfort and support you
I am sure with the physical problems you have you can get refered to a sex therapist. What Dixie has already said is very true re your ailing sex life, but maybe if your lovely husband is willing you could get some 'proffessional' tips. When my husband was still at home and the MS meant we could no longer have sex as "we knew it!" the Dr. refered us to a specialist in sexual problems for the disabled.I must say they were very well versed in the different things you could do!!! Depends how adventurous you can/want to be!
Your husband obviously loves you very much and I am sure he does not resent in any way the things he does for you.I can understand how low you must feel at times too.
Glad you have your Blue Badge. I have recently got mine and it has made me more tollerant when I see people park in the disabled spaces with their Blue Badge and then leap out and trot off to the store or where ever. Before I would have queried "How on earth can they get/need a badge". Now since my experience with Fibro and the goodish and bad days I have, I think, "They must be having a good day." I too still feel a bit self conscious using mine and feel I too am being judged. But hey, perhaps not eh??
I do hope you will continue to get proffessional help and that things will soon look a little brighter for you. XX
Ah u ar never alone u are strong enough to talk about it that's all it takes to get support and friendship we all have terrible days months times we are all the same fibro is hard enough but then life throws more at us
U have to make goods days find non stressful on body and mind things to do things were u can forget and laugh and have fun as much fun as possible I may be I'll with fibro but I'm retired so I can concentrate on wat I need
Be it a day in bed a day in the heat of a shower or a cry or just to talk but I'm free from work ties to do wat I want wen I want with great friends beside me u may feel weak but u have inner strength which is the strongest take care michelle
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i had a hysterectomy at 28 after various miscarriages so i have no children. I now see this as a thankful thing as I would feel so guilty if my child had to be a Carer for me. The worst thing for him (and me) is a serious lack of sex life. I cannot have sex due to a buggered up hysterectomy which brought on Atrophy of the Vagina. Even getting aroused hurts. In 5 years we have had sex, or attempted to have sex, about 5 times but it always ends in tears and apologies from me and him feeling guilty for hurting me. Unfortunately there is nothing that can be done. I am on the highest dose of HRT which usually solves this problem. I don't know why he stays with me. He works 12 hour days and then has to come home to cooking, cleaning etc. He is my rock but he deserves better. 
We are blessesd to have OHs that love us. Can you imagine how devastated he and the others who love you would be if you did harm yourself. They would be left feeling that they had failed you. 
I have often wondered what triggers fibro?
Wondering what to do now?!
I don't know what to do about work
