All your fibromyalgia experiences, questions and answers.

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Postby shmoif » Thu Aug 20, 2015 8:48 pm

Hi there,

I am new to the forum so firstly, hello and best wishes to all!

I was diagnosed with Fibromyalgia earlier this year (after years of unknown chronic pain which landed me in hospital for 2 weeks in 2013). My life has changed substantially as a result of this horrible condition which was made worse because of a difficult labour last year.

I have always suffered with anxiety and insecurities, I am my own worst enemy at times.

The reason I have posted this topic is because my main issue (aside from the immense pain I am in all the time) is the major feeling of guilt because I am unable to look after my daughter by myself, I am sometimes even unable to pick her up due to the pain, sudden spasms or because my body just seizes up. The main reason I cannot look after her by myself is because of the potent medication I am on (oramorph, methocarbamol, zopiclone, codeine, pregabalin) as prescribed by my GP.

Luckily, my husband and I are in a position where we don't have to work right now so he is able to help or just be on hand when the pain gets really bad. We also have a fantastic, supportive family who jump at the chance of looking after our girl should we need the help. Despite this, I feel constantly guilty. Guilty that my husband has to do the things I should be doing for our girl. Guilty that my family have to help. Guilty that I am unable to do things sometimes - even basic things like doing the washing up. Guilty that I can't do everything for my beautiful girl that a mother is supposed to.

Let me explain though that I am a lot better and a lot more able than I was a few months ago. I have been doing everything I possibly can. I am rather stubborn and will sometimes do absolutely everything from looking after our daughter to cleaning the house and doing the gardening. This can then cause me to suffer for days after but I can't help it... It is because I feel so guilty or feel I'm not doing enough (even when actually I am doing everything I possibly can).

We recently moved from a dark, depressing basement flat where we had so many bad things happen from noisy, obnoxious neighbours to being physically attacked (completely unprovoked) by a neighbour's boyfriend on our own driveway (3 steps from the front door) when I was 20 weeks pregnant - which landed us in hospital.
I nearly died in 2013 in hospital (which is when all the pain started). We lost 3 family members in a year - my Grandfather and my father-in-law died from long illnesses and then, tragically in January, I lost my big brother - which I am still struggling with. So many horrible memories in that place...

Then we moved to the most amazing place and I am so much happier here and more active than I've been in a while... But when I can't get out of bed in the morning because of muscle stiffness, when I can't get moving in the morning until the oramorph has kicked in, when I can't get dressed, when I can't get downstairs easily or have to crawl my way up, when I feel so much pain or am so tired and I can't move any part of my body to take a shower or reach for the cereal, when my body suddenly starts jerking due to painful spasms that I cannot get at all comfortable, when I suddenly get hit with a migraine or feel like I am going to faint, when I don't sleep at all at night or get 2 hours sleep and get clumsy or forgetful (even though I take sleeping tablets)... Most importantly... when I can't pick up my 1 year old child and my husband has to carry her to her changing table so I can change her because I can't carry her there myself... I feel so guilty, so bad... I feel like a bad mother or wife. I think to myself "Other mothers can do everything for their kids, I should be able to fight through it all". My husband always tells me off for thinking this and says "Other mothers don't suffer with a debilitating illness like you do, give yourself a break. You do pretty much everything for her. You sometimes can't pick her up, but that doesn't stop you changing or feeding her, playing with her. You're great with her and so calm and patient. You're a great mum" etc.

How do I shake this feeling of failure? My daughter is my life, my world... I feel so lucky to be her mum. She is so well behaved and wonderful. She's so cuddly with me and only calms down from crying when I hold her or sing to her. She is always smiling or laughing and gets so excited when she see's us. She picks things up really well - I've been able to teach her lots of new things and I got her to eat proper food. She is a part of me... I am always thinking of her and when I am feeling low, she is the only thing that makes me smile... I love her so damn much (God I am actually starting to well up here haha).

Then there's the feeling that people think I am being lazy or because I don't look ill, I can't be that bad.

Has anyone else been through this or thought they were failing something? I feel like no one understands me or what I go through every day... not even my doctor!
That's why I joined the forum. For support from people who ACTUALLY understand.

My goodness this post sounds so long and miserable... I'm so sorry. I'm not like this normally, just finally getting my feelings out I guess.

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Re: Guilt

Postby Gracious » Fri Aug 21, 2015 12:12 am

Shmoif, my advice would be to speak to your doctor to get referred specifically to a Pain Psycologist to help you deal with your thoughts and feelings. Difficult and unpleasent thoughts and feelings can lead to lots of additional stressors and this can then lead to more physical symptoms, especailly when dealing with FMS/CFS.

In the meantime, with regards dealing with what seems crippling guilt. I can only explain how I work with my thought and feelings. I have been lucky to get some great therapy, specifically ACT (Acceptant and Commitment Therapy). This has helped me deal with moment to moment issues as and when they arise.

I have the luxury to live with my parents, though my mind tells me its awful at 45 i'm not independant, nor holding down a job and instead of looking after them, they're looking after me. This can make me feel awful, I sometimes feel trapped, angry, and say things I dont mean. Then other times I'm grateful I have what I have and I'm not alone. Recently my parents health's have been very poorly and I felt a deep sense that I need to do more but at the same time I'm currently in a bad flare with all sorts of issues, (Fibro is having fun at present). Now I feel a deep guilt that I can't do more to help them at this time. Now I have a lot of choices. I could push through my flare and make myself even more ill, I can ignore my pacing schedule and trigger a bigger flare, I can lie in bed and bury my head in the pollows and cry in guilt and shame, and listen to my mind telling what an awful daughter I am.

The question is, does listening to my mind selling me this wonderful story help me. Even the feelings of guilt and shame. None of it is helpful, none of the behaviour that comes with it nutures what is important and of value to me. So I ask myelf what behaviour would.

These past weeks I have allowed all the guilt and shame to be there, but not acted on it, instead I have worked on whats important, health & family. I have stuck to my reduced pacing to encourage recovery, when I could help out, I've done little things for my parents when possible and happily compromised on other things. Would I like to do more, of course. but there is a point where you need to work with your own personal reality gap, acknowledging what I you are capable of and what I want to be capable of doing. If this gap is big, then you guessed it the bigger the emotional pain can be. The emotional pain can cripple you in a functional way.

I've learned to be accepting of the thoughts, emotions, sensations, your going to have them, because life throughs a lot of reality gaps at us, when we are not experiencing what we wanted/expected. Its okay to geel guilty, but dont be consummed, instead ask if this helps you in this moment to tend to your fatigue, your pain, to bathing or feeding your child, if it not helpful thank your mind for sharing, its acknowledging of your current situation, but then do some small act towards whats important.

It is just as import to accept your body is tired and needs looking after, as its is to looking after your child. Look for ways you can get more family support, not just from your husband. Our minds are great problem solvers, but when we become blocked with diffucult emotions, it spends more time dealing with that than looking at alternative options and solutions that would be more helpful.

I was very upset I not being the Aunt I wanted to be to my nephew and nieces. I wanted to be active with them, take them places, buy them great gifts, but that was not possible to do due to the impact of Fibro. So I looked at other ways I could paticipate as an aunt, came up with lots of bonding activites that worked for my body and health and finances. Now I have a close and loving relationships with them all, they love cuddling me because I'm so warm all the time (Thanks to Fibro), they love movie time with me, board games, making up music compilations, drawing and creative junk days. I've taught them maths, I've read them stories, puppet shows, etc. when I first thought about being an aunt I thought, theres no point in trying, I cant be what I want, I may never be able to be that aunt, but that doesnt stop me from trying to be the aunt I can be, and offer the best of me I can, whilst respecting my own health needs.

Shmoif, dont be too hard on yourself, these feelings you have I are telling you how much you care, I'd be more concerned if you were not feeling this way. What you do need is some help if finding ways to accept these feelings are there but still move forward with your life and finding ways to achieving and doing the things that are important to you.

You have been blessed with the privilage of motherhood, it does comes with worry, guilt, and hard work, but it also will bring love and joys that will make your heart feel like its going to burst.

I'm sure there are others on this forum that will have lots of helpful advice to give.

With loving kindness
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Joined: Thu Aug 14, 2014 6:45 pm

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