Guilt and Shame

[Grassisgreener]

Hi does anyone else suffering with Fibro feel guilt or shame having to ask for help from others who do not really understand the condition and think you are putting it on?

I have recently been diagnosed following two earth shattering traumas I pray nobody else has to experience. Up to then I had raised my family, was enjoying my grandchildren and shared a very full social life with my husband. I worked full time as a Fraud Investigator and loved life. Now on the days I can actually get out of bed I need help with simple things like showering and getting dressed. I dont have the energy to put on makeup or socialise. Pain exacerbated by arthritis means even making a cup of tea can be unbearable and I can't remember when I last successfully cooked a meal.

My husband is 74 and dispite being disabled himself finds it hard to adapt to changes and makes me feel like I am just being lazy. I have tried....and tried to make him understand that unlike his disability others are not visible. He thinks that one day I will be better and things will go back to normal. I feel partly to blame as I held everything together after a Bipolar diagnosis in 2014 and strived to get on top of it. I guess he feels I will do the same with Fibro. Accepting and managing a mental illness is one thing but trying to live with constant pain and fatique is another.

Yes I got depressed when I had to stop working, but I accepted the concerns raised by my employers and gave myself a good mental kick up the bottom. I try not to think woe is me and that life isn't fair afterall I am blessed with life itself and a beautiful family. But I am only human and still occasionally indulge in an occasional sulk and what could have been. On the whole I do keep positive and enjoy the time spent with my grandchildren who now ask if they can hug me. So what if I don't bake cakes anymore, the supermakets have them. I may not be able to concentrate on reading a book but I like the challenge of a crossword which I can take my time with. Friends call and ask if I am up to a chat or send cards of support rather than just turning up and whisking me away for the day. Ok so the garden doesn't look as neat and tidy as it did but think about the wildlife it will attract. I don't really miss shopping as I never liked it anyway. And isn't showering getting dressed with the help of your husband intimate and caring?

I have had a relatively good few days where pain has been around a 3/10 if you exclude my finger getting trapped in a door. I have managed to stay awake for 3hrs on those two days before needing a 'nap'. Hubby thought this is the begining of the recovery and that I will be cured by the end of the week and we can pick up our social life and he can look forward to a Sunday Roast. Today ( its not dawn yet) I am lucid but the pain is already at a 7/10 and the nasty side effects of my meds has required assistance twice tonight. My head is thumping and as I reach over for more painkillers he sleepily mumbles that I will be fine in the morning. Resisting the urge to throw a pillow at him (or should I say knowing the pain in my shoulders will prevent it) I turn the light off and tell him I love him.

[maxamas12]

No!! Do t feel guilty. It's hard if people don't understand. I sent my daughter and husband some links from websites to read so they can try and understand how I am feeling on the good and bad days. I think it worked slightly. Perhaps do the same to your family and friends. Lucky for me my work colleagues have a good understanding of the condition and are great.

[Grassisgreener in reply to maxamas12]

Thank you for your reply and its a great idea to let them read about the condition. I will send links to the family and ask for a group video call to discuss things a week later.I clearly have lots to learn myself and even though I've not got the pain under control yet I am determined to get there.

I am glad you have support from work colleagues and hope to get back into the workforce one day. Keep well

[Wobblygirl]

Your story is extremely sad but I know exactly what you mean... I only live as a couple at weekends so I know about the extra demands. Yes shopping for easier food is always an option but at a greater cost. I am fortunate that I can pay...The roast dinner can be delivered from some pubs as a treat???

My partner has had 2b taught so much abt food prep so good meals can be put together with shortcuts! He is able bodied+ understands to a degree...

Yes to getting your husband to read more abt this condition. It may help him 2 understand the deeper long-term issues?

Because of my income I hv bought in a cleaner,gardener and occasional cook to deliver meals. This helps considerably but yr husband will have to understand that huge changes are needed to adapt from yr former life... Good luck and do keep in touch. X

[Grassisgreener in reply to Wobblygirl]

Thank you for your response there are quite a few avenues for me to explore that I just hadn't considered. I will look for local gardeners and cleaners and try to find my husband a cooking class or two. He has never cooked but can manage beans on toast and 'chef de pings'. He grew up in the culture where there were clear divides between a man and womans role in a marriage. Ive broken him down over the years but the kitchen was my domain. My daughters have been batch cooking between them and keeping the freezer full but i must admit an occasional cook is a great idea.

Keep well

[Wobblygirl]

With a learning cook I try and advise from a comfy seat in the kitchen! Obviously it has to be kind guidance and occasionally just silence your outrage at simple misunderstanding eg slicing onions as opposed to chopped onions... It's not always easy but we do together create some lovely meals and baking using his two good arms! He prepares all veg and stirs as my arms/hands/shoulders are hopelessly empty!I plan the meals+shopping and try to keep to easier meal plans where a lot can be done in advance or with a slow cooker so the pressure is less!

I order lots of shortcuts like quick rice bags, chopped veg, grated cheese, potato dishes and frozen veg. It means meals can be created quicker and not so onerous on the new chef. Obviously traditional roasts or fried food where timing is crucial are very rarely made... Tomorrow we're roasting a chicken with stuffing, new potatoes+veg and gravy. We now sacrifice the roast potatoes but it's fine... I do hope you can take some tips from my journey??? My partner never cooked at all but now as a great sous chef he's more appreciative of the food that we prepare together. The comfy seat is essential and starting early to ration out tasks throughout the day...

I hope you don't mind me offering my practical suggestions? I wanted to improve nutrition+step away from microwave meals.

Cheers x

[Grassisgreener in reply to Wobblygirl]

Brilliant advice thank you so much. The advice and replies to my post are invaluable. I am sending a big virtual hug to you all.

[debwhit]

Hello I'm sorry to hear of your diagnosis, I have had fibromyalgia now for around 10 years. I was originally miss diagnosed with polymyalgia rheumatica and filled full of steroids as this was the only med of choice back then, bur after a trip to the rheumatology department 3 years later and a body that resembled the Mitchalin man I got there. For around the next five years I live a semi normal life still working etc . So my family just presumed that was what my illness would be like..........Then bang!!!!!!!

About 3 years ago I felt like my life was over ..... I can hardly walk, certainly can't dance, I'm crippled with constant pain and my depression and anxiety is at an all time high. As a family a day out turns into a hopeless nightmare.... I have very little support as noone understands how I feel both physically and emotionally but I'm thankful for my life. I can't cook like I used to but thanks to slow cookers and pre chopped veg. I do manage a bit.

I live on a cocktail of strong meds but am still in constant pain the bulk of the time. I make myself go for small walks but end up sleeping afterwards so unsure if the walking helps. I cry in pain and cry even more when I'm alone in bed.....

I told there's nothing else the doctors can do so this is my life.

I went from running my own successfull cleaning Company and living a full life to being similar to a cabbage I think.

Good luck with everything don't be scared to take meds it can help. Good luck and keep in touch xxxxx

[Grassisgreener in reply to debwhit]

A special heart felt hug to you. You have had a terrible journey and I can relate to how you feel.Let's take the cabbage off the menu, you clearly are a wonderful and amazing person.

I misread your line about meds and thought you lived on cocktails, it made me giggle and visualised you posting with a Margeritta on the go. Keep well and in touch

[debwhit in reply to Grassisgreener]

That would be funny but my meds couldn't take the alcohol haha xxxx

[Grassisgreener]

Ditto lol. I think I am going to focus on the little things I can do rather than those I can't. Positive thinking they call it. Who knows maybe we all have undiscovered talents. I'm learning towards a blog at present which I feel we all could do.

Next step for me is to join a support group one started locally two months ago, I couldn't get out of bed for the first one and in too much pain for the second. Determination will get me to the next one. Is there one local to you?

[debwhit in reply to Grassisgreener]

I wish there was support groups near me as at the moment I am at rock bottom and could use speaking to people in a similar situation to myself. Xx

[maxamas12]

Some days I can get up for work and think "I can't do this" but I push myself.to the point of burning my hand one morning as doing my hair was a real challenge. But do think about the good days and what you can achieve on them. I washed the car today and I'm so proud of myself! My family said if you can't it's OK but like I explained to them it's good to feel like I can like I used to so when I can just let me get on with it. Tomorrow. Ight be a totally different story.

[Grassisgreener]

What an achievement I'm sure I am not alone in admiring your spirit and go to attitude. I felt that the same when I managed to vacuum the bungalow, it knocked me out but boy was it worth it. You are still driving? Oh I envy you. I find it's too painful and the Fibro Fog nearly caused an accident. I got completely confused and scared at a roundabout. Anyone who knows me would confim I'm a confident person and driver but this has knocked me for six.

I hope tomorrow will not be as bad as you know it can be and keep smiling today should be celebrated.

[maxamas12]

Thanks. Yer I am for now and determined to keep going. We have discussed at looking for an automatic on the next car we get as sometimes the pain is bad when changing gears, clutch control. The brain fog is manageable I just need to think about what I'm trying to say sometimes before I say it.

[Moomaa]

Hi. PLEASE PLEASE dont feel guilty! Its other people that should feel guilty for not listening to us & trying to understand how bad it is for us. My siblings have no idea how bad i am, & when i have to cancel meeting up with them due to being too tired & drained or in pain, they moan, but its tough. I used to feel guilty but i dont now. I have a wonderful husband who gave up his job to be my fulltime carer as he saw just how bad i am. He doesnt understand it fully, but he knows that i suffer bad pain, tiredness etc, & that means a lot that he gets that. I have it so bad i had to have all my teeth out too after they crumbled, ( last 2 out next week ), also problems with my eyes too. Its evil, & none of us ask for this horrible illness. Sending love & gentle hugs to all fellow fibro sufferers. 😘💕😘💕

[debwhit in reply to Moomaa]

You are so lucky my husband and family are absolutely useless and just say I'm lazy and need to do more exercise...... I wish I could sometimes I can't even walk upstairs without crying. I'm so fed up of noone understanding me. I donr even think my doctor understands me really it's so hard.