I dont often vent, in fact I dont think I ever have....but today I am going to.
Dont get me wrong I love my partner and my two lads and appreciate the little things they do for me.
My partner teaches Horticulture/Agriculture/Countryside Management.....it was these common interests that brought us together....he has a couple of days off this week.
I have just asked if he would walk down the garden with the dogs and me (garden a right mess, dangerous and resembling Steptoes yard, except for the beds which I lovingly tend on my good days).....I wanted to feed the birds and take the dogs along, one dog not well and needs to be watched, I cant carry feed, walk with a stick etc etc etc..
All I wanted was half an hour at most to do something that I love....I got no more than 10 minutes of angry man shouting at dogs etc....I struggled with feed, poorly dog like nervous wreck, he walked off left us (I dont moan and didnt moan, Im too placid) I walk back to house he has now buggered off back down garden to saw logs.....there has not been an argument or words but Im seething inside.
I miss being able to do things at the times that I want, in my own way, know its not always possible but wish that people would listen to what I want and need.....people inevitably go off at a tangent, completing tasks in their own way, ignoring my views (which are good, Im not daft, have a brain etc) leaving me feeling demoralised, sad and powerless...
I give in quietly, go with their flow but find myself wanting and needing to do the things I used to love, the things that bring me joy and all I seem to do is struggle to keep them happy or sit waiting for them to give me their time....
At this moment I could scream and rage, but it will not achieve anything.
I am not selfish, my house is undecorated, in ill repair, Im not one to nag or push for perfection, Im laid back, not an ogre.....
Today Im angry at their lack of empathy or understanding,,,,The thought of living on my own is starting to appeal more and more as my ability to give is becoming smaller and smaller.
Im done now, big sigh....thank you for giving me the space to vent.
Wishing you all love and happiness,
BethXXX
Written by
Bethy1962
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Poor you xxx weve all been there, done that, and got the tshirt in relation to a lack of understanding or empathy from our nearest and dearest. Bless them they try hard but unless they are actually struck down with this cruel condition (something we would'nt wish on our worst enemy) they will never trully understand our pain or how we grieve for our former self/life and long for normality.
Feel free to come on here and vent whenever you need to let off steam as the forum provides a safe space for you to do so. Also have you ever thought about taking some assertiveness training in order to give yourself a voice and have your emotional needs met.
Not speaking up for ourselves or constantly allowing ourselves and our views to be ignored or allowing more dominant people to dictate our daily routine robs us off our peace, self respect and ability to steer or own course through life.
You sound like a very smart lady who has something to offer the world in terms of warmth, experience, empathy and kindness perhaps its time to step out of the shadows and learn how to communicate and negociate to ensure your needs are fufilled. I trully believe that our emotions play a huge part in our physical health those of us who are emotionally unfufilled seem more susceptible to contracting conditions like fibro! So Think about assertiveness training your worth it
I agree about the assertiveness training - very well worthwhile!
the trouble with families is that they don't know what to do to help, and often feel that if they ignore our illness it will go away - they get worried and can't cope, so become grumpy and unhelpful!
I find it's best to be very clear (and assertive) about what you require to be done. Practical requests for help are much more likely to be effective, as men are very bad at empathy - they just don't pick up on our signals, and need our help and instruction in order for them to be helpful.
It's good that you've let off steam, Bethy, and you've expressed your feelings very clearly.
I wonder if you've been able to communicate just as effectively with your hubby? My bet is that there is a bit of work to be done there! Try it - you have nothing to lose.
Moffy x
Have to agree with both posts... My OH does loads for me ...but he has to be asked, hints fall on deaf ears, and even when asked he forgets some things, so I bite my tongue and work on the really important things I know I can't do. maybe you could sit down with your OH and work out a few things that you would really like doing that you can't .
I could be reading about MY life in what you have written! Everything you have written is EXACTLY the same as how things are for me. My partner is fantastic and does lots for me but by golly do I know about it! He is THE new victor meldrew lol. I recently wrote him a very long letter in which I made sure I didn't blame anybody for anything but I very clearly wrote about the way in which he spoke or responded to me made me feel. I explained about how I felt about having fibro and all it's accompanying symptoms, describing how lost and vulnerable I felt and how I felt that my life had been taken away from me in one swift stroke, leaving me devastated. I've also had fibro for 4 years, before that I was a lifeguard and personal trainer, on the last level of my nutrition course and looking into teaching children to swim. I had a fantastic job and loved what I did. Wow did that all change!
I had a tummy tuck that had complications and was I'll for a year. 6 weeks after the op, I took on 2 of my 3 grandsons as my daughter and her husband couldn't cope. They were only 1 & 2 and had some serious behavioural issues that continue to this day. Both of my daughters had ADHD and I'm positive that the boys have it too but are only just at the age where they can be assessed.
To be honest, I could write a book about the last 18 months, the illness in the family has been unbelievable! My mum who has fibro and copd among a list of other things and dad had heart attacks in the same week, both recovered, my big sis is recovering from throat cancer diagnosed last summer, my younger sis, who also has fibro had cervical cancer, a baby 2 months early, and a month ago had a stroke which left her paralyzed down 1 side and with serious speech difficulties, last June I was diagnosed with severe gastritis due to the stress! We are all recovering thankfully but what a lot to cope with! O yes, I've also had to fight off losing the house 6 times in a year as between the fibrofog and worry, I wasn't checking that the necessary payments were being made. My younger daughter and her partner were made homeless a month ago and are staying with us for a few weeks while they sort themselves out. 6 people in a 2 bed house,whew!! I've come through it all and am still standing (in a fashion lol) I'm just grateful that everybody is ok.
I have decided to be a bit more proactive this year tho and put more energy into getting help with the house as I just can't live in it any more. I've got a hole in the roof, the heating needs servicing and countless other jobs to do, much of which is beyond my partner and I. I don't even know where to start!
I should also have claimed DLA a long time ago but can't bring myself to do it as I know it will go to appeal and I don't think I have the mental strength to cope with it.
Anyway, now I've written my life story I'll stop now lol
It's great that we can come and vent on here as it's the only place I feel people understand what we have to cope with every day. Today is a severe pain all over and fatigue but mentally I'm not too bad which makes it a lot easier to cope. Even now, I'm only just learning the signs and signals my body is giving me. It's a long process but I'm getting there if you know what I mean?
About the letter I wrote to my partner, maybe you could try it? You don't have to impart blame on anybody but maybe you could explain how having fibro makes you feel and the ways in which he and the kids could make it easier for you to cope? My partner cried when he read it, he was so upset because he had no idea I was feeling that way. It's made a big difference to how he relates to me and the boys which has meant that there's a fair amount less stress around me. It's worth trying, you never know, like me you may be amazed at the results! It's not plain sailing and I do have to remind him of things but I'm really glad I did it. If I tried to talk to him about things I could see his eyes glaze over so thought that this was the best way.
I hope that if you try it it works for you Bethy. You sound like you need to let him know how you feel. The assertiveness course sounds like a good idea and one that I'll be trying for myself. I'm also laid back and am the "anything for a quiet life" type so have felt just the way you do. The letter was just the start. I'm actually thinking of writing one to each of my daughters, sisters etc
Oh dear Bethy I feel for you so much. I think Chilli's idea of writing you're thoughts etc, are such a good idea. I will be thinking of you, take care S x
When you read it, its like a book isn't it? the strange thing is that I don't feel amazing, it's just my life and i get on with it. It's only when others comment that I realise that I must be one heck of a strong woman to cope with all of this and still be sane! I am on quite a high dose of duloxetine, which I must say has helped enormously! I take 60mg twice a day.
I'm also thinking of contacting the local mental health team to see how they could help me. My partner is amazing but I do think I need more help. I'm also going to apply for DLA, something I've been putting off for months as I don't think I would have coped with the added stress of an appeal. I have an appointment on Monday to see the dr (not my usual one but a fresh pair of eyes might be a good thing) to discuss getting a copy of my medical records and a letter detailing how my ailments affect me day to day. One of the 2 drs I see has been with me since my operation and diagnosis of fibro, gastritis, raynauds and depression. She is really good but when I asked for a letter from her, I got 2 sentences with my diagnoses and saying that she didn't think I could hold down a job at present. I want to try and get a much more detailed letter to send, along with a copy of my medical records. I figure that the more info i give them, the less chance I will be turned down straight away.
The problem is that I've missed several appointments, including one with the rheumatologist who diagnosed me, due to fibrofog and stress and I'm pretty sure this will go against me as they will see it as if I don't turn up to appointments I don't need the help. I'm also going to email for the benefits and work sheets to help with my application.
Sorry, I've gone on again lol. I don't post that often but when I do, it seems I have a lot to say! So apologies to the people on here who have trouble reading such long posts.
Love and gentle huggles
Chilli xxx
P.s I'm sorry,it seems like I've hijacked your post Bethy
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walking aides for fibro !
please may I whine again?
feel like a right numpty ,broke down at docs :(
Im a nice person really....
PLEASE advise
