struggling to cope

[PenelopeClearwater]

hi all

I’ve been absent from this site for a while, as I’ve been having a flare up for the last few months and it hasn’t been giving me much respite…

I have really been struggling to come to terms with all these changes. My arms and legs are so painful and weak that I can’t walk far without crutches and now I can’t even manage those, so I have just received my motability wheelchair. I love the chair, but I’m mourning the old me who had so much energy.

we’re getting a stairlift fitted this week, again - great news, but I’m struggling To come to terms with needing it.

I’m really doing My best to adapt and be pragmatic, but sometimes, my emotions get the best of me and I just can’t stop crying. It’s like a break up with someone I won’t be able to be with again. I feel genuinely heartbroken.

I know you will relate/understand, so I just thought I’d share.

I keep getting awful migraines, so I’ll try to answer to any replies I might get, but apologies in advance if they’re brief… it’s taken me weeks to get round to coming back on here.

Thanks for reading 💙

[fmlife]

I had the same feeling when oh borrowed a wheelchair to do the grocery shopping, has it really come to this, after shedding a few tears.

then i thought well that's going to help extend the day,

it is going to allow me to go out. something i had not done for years due to fibro flares keeping me house bound.

a wheel chair even a mobility scooter, is like a car,

its main purpose is to put a smile on face while driving

helps get you from a to b. the stair lift sounds like may help too,

it's only transport saving you energy to do what you enjoy, or need to do as efficiently as possible, extending your day.

can ask doc for cbt councilling to help with the grieving process and adjustment to this new you in training,

be kind to self that's the most important.

honestly this is not a negative this is a positive.

just a note, watch out for tall kerbs and blind knobbly pavements,

gentle hugs

[PenelopeClearwater in reply to fmlife]

thank you 💙 I really needed that and appreciate your words of encouragement 🥰

[KimiJay in reply to fmlife]

Feel I must acknowledge inspiring reply. Reminds of my aunt who had polio at 11. Even with one arm not fully working either she totally mastered the art of wheelchairing and helper management, and post war even travelled in guards vans on trains with kind and public spirited guards! More difficult with fibro because of our lack of energy and pain and the acquisition of exciting new abilities to unbalance and fall over, but yes, much more is doable once grief is shifted to the side a bit.

[Jaycee18 in reply to fmlife]

love the concept that all these things are just aids to help us do what we need to do, so that we can focus our energy to enjoy what we want to do x

[Barbie12]

💞

[KimiJay]

Hi PC. I had noticed that your name hasn't been on replies to posts for a while. So sorry you are going through all this sadness and pain. I can't improve on fmlife's reply to you. She says it all and more because she understands so well where you are coming from by her own experiences.

Sending you the gentlest of hugs and healing wishes and hopes that when this horrible winter is over you will begin to surface from your grieving and that a way forward towards something more life affirming will present itself. - Do not even think to reply. Just absorb best wishes and a virtual stroke or two for your little cat. xx Jo KJ

[fmlife in reply to KimiJay]

thank you for your very kind words.

[PenelopeClearwater in reply to KimiJay]

💙

[Debsdelight72]

It sounds just like me , I hav'nt grieved enough apparently,

I now have support from the NHS mental health, Not just about being ill,

There is no shame asking for help, I"m only 50, For the past 4 years I have had a stair lift,

I have a great mobility scooter (goes any where ,apart from through the front or back door,)

Waiting for grant to widen front door with the help of our landlord.

And a mobility electric chair that goes in our van.

Some of these were donated, some was some really hard saving,

I'm awaiting for the results from OH and to check if my kitchen counters can be lowered.

Before covid I didnt really go outside, Only hospital appointments and dentist,

Any way I digress, It's really hard without any support. So take it, Or ask for it

I hope you will get the help and support you need,

Take care

[Tillytrots]

Hi Fibro friend you are going through the same as me apart from the stairs I am lucky to be in a bungalow I have had fibro for years but I have not long been diagnosed with it as I have arthritis also degenerative spine disease so I went on for years thinking that's what it is until my GP said I have fibro I was shocked so I have all three pain thing's one on top of the other but I am like you with coming to terms with it I am on two sticks and also have a super motorbility chair it rises up and down reclines and seat adjusts it's fantastic but I wish I could walk normal and do what I used to do I really get annoyed at myself also the fibro fog I am nearly 72 my brains ok but my body has gone I find the fibro fog funny sometime as I asked my husband to get me a sausage roll instead of saying toilet roll and I said push that washing machine back instead of saying the fan we have to laugh about it buts it's terrible and like you I do a lot of crying it just comes on and as for the headaches and migrains I never used to suffer from them, I have dreams that I am walking ok but when I wake up and ime like this so I do simpathis with you so remember your not on your own we have all are Fibro friends on here so keep warm and space yourself which I am trying to do take special care by for know sending a big fibro painless hug.xxx Wendy

[Blearyeyed]

I completely understand, each change was a loss and I felt genuine grief at each new stage .

Acceptance is so hard but one thing I always say to people now which brings them comfort, in the way it did for me is this.

You are still You. The clever , beautiful , individual, funny , strong and heroic You that You have always been. It's just what You can do that has changed , not the You that matters most.

And think of the positives of these adaptions if you can. You don't need to struggle so much , you will be able to get out more , go further than you have in years and visit things you thought you wouldn't do again , all from the comfort of your own chair. Using our mobility aids isn't a sign of our faults or failures , it's a sign that we have the good sense to make life easier and will be successful at improving our lives . Rather than reducing our feeling of confidence, it improves it , and rather than being self conscious , within a short time it allows us to act more like our old selves because we can feel more safe and confident.

Completely understand about the migraines , no need to answer , just hope my reply was some comfort. Heads up , with less stress or discomfort doing physical things you will hopefully get far less stress and activity migraines too.

Take care , Bee

[PenelopeClearwater in reply to Blearyeyed]

🥹💙

[Wobblygirl]

Grieving takes time...Acceptance and being able to adapt when you're feeling so low is so v v hard!

Time and treats and any distraction can help. My fibro is very different, but when really low I restart my Gratification notebook to attempt to change my mindset... I try and focus on what I have achieved and what's gone better...

Today my list would include remembering to eat a lunch sandwich, finishing the washing up from y'day+watering few plant pots!

I will try+delay my angst abt not having a bath+still wearing my nightclothes...

tomorrow I will try again...

Gentle hugs to you Wx