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Staying positive

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By *inky_couple2020 OP   Couple
over a year ago

North West

Lots of Fabsters know about my situation. We're still waiting to complete on our move to a bungalow and my disability issues have become worse in recent months. I've had to allow myself to take strong codeine for the first time in over 2 years just to cope with pain and it's becoming almost impossible to use the stairs.

So, I've spent all weekend living upstairs so that I can get to the bathroom. Obviously Mr KC is looking after me, bringing my meals upstairs etc. but I can't participate in family life from up here. Before Christmas, I kept myself positive in knowing we had our holiday and so I focused on that.

We don't really have any firm plans for this year because everything hinges on the house move, which we don't yet have dates for. It could be any time or it might still fall through. We don't want to plan trips or commit to anything substantial for obvious reasons, plus I have £4.5k to eventually repay my employer for my new wheelchair (NHS rejected me).

I'm struggling to find anything to focus on to keep me positive. Work is ridiculously stressful at the moment - I've been dragging my arse in and working extra hours because it's preferable to be near an accessible toilet than it is to go home. I eat breakfast at work because the café is wheelchair accessible and I don't have to worry about trying to move a bowl of cereal whilst hobbling on crutches. Everyone at work knows me and how to help me.

So, any contributions about how others maintain positivity in the face of adversity would be interesting to read about

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By (user no longer on site)
over a year ago

LadyO here.

I'm not in your situation, so I don't think I'll have much of any use to say.

You have mentioned lots about your physical environment, and I can tell there's lots of stress around the house move and the cost of the wheelchair.

What's not coming across is your social network, the social support, the mental well being. I hope you have those things in place, too. It makes a big difference to our ability to face lifes challenges and obstacles.

I hope some of the stressors subside soon.

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By *inky_couple2020 OP   Couple
over a year ago

North West

Apart from Mr KC, our 5yo daughter and to some extent, our 20yo son, we don't really have any other support. I am estranged from my mother (for very good reason). I am the main carer and next of kin for my Dad who has dementia and lives 1.5hrs away. Mr KC's parents are carers for his sister and two children. We have to look after ourselves. I worry a lot about Mr KC, who has to do far too much. My brother is intermittently able to offer limited help but he has his own issues too. No other family....

Friends - mainly emigrated to other places, few remain up here. Many didn't adapt when my disability began and dropped off the radar. Best friend lives in Surrey....

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By *ellinever70Woman
over a year ago

Ayrshire

You talk often of how supportive your husband is...surely this is a positive thing

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By *inky_couple2020 OP   Couple
over a year ago

North West


"You talk often of how supportive your husband is...surely this is a positive thing "

Yes, he is. He's absolutely amazing. But he is also completely knackered and I feel very guilty that he has to do so much, while I'm stuck upstairs. The guilt is enormous. He has never once complained

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By *ellinever70Woman
over a year ago

Ayrshire

Would some kind of therapy help with your guilt?

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By *hunky GentMan
over a year ago

Maldon and Peterborough


"You talk often of how supportive your husband is...surely this is a positive thing

Yes, he is. He's absolutely amazing. But he is also completely knackered and I feel very guilty that he has to do so much, while I'm stuck upstairs. The guilt is enormous. He has never once complained "

When you love someone there's nothing to complain about.

Hugs xx

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By (user no longer on site)
over a year ago

Op first off, sorry to hear of your situation and negativity creeps in...

This may sound daft to you and others,

when negativity creeps in for me, I write a gratitude list of the things that I'm grateful to have to have in my life. It helps me to get out of that negative cycle of thought, and the resulting feelings these thoughts generate within me..

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Would some kind of therapy help with your guilt?"

I'm undergoing counselling at the minute but the NHS offers 6 sessions only. I've had 3 sessions and we've barely scratched the surface. It feels like 6 sessions is nowhere near enough unfortunately.

I challenge anyone who suddenly goes from abled to disabled not to feel like a massive burden on your family etc. Knowing lots of disabled people, it's almost a 100% feature unfortunately.

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By *ou only live onceMan
over a year ago

London

Sorry it's such a tough time, KC. I don't think I'll be able to offer any particularly sage advice. But I do know you must try not to feel guilty.

This is so much easier said than done, and I know it's trite, but I try to break things down when the overall situation feels overwhelming. What small things do you have to look forward to/can you plan?

But also, just remember it's ok to say you're feeling a bit crap, and there's a lot of crap going on, but it will pass...

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

Can you run to a cleaner financially? Or a someone who would carry out light housework duties? I know it's not ideal but it would lift the load from your partner and allow you to spend time together as a couple.

Is it possible for family living to take place upstairs? You might not feel so isolated.

Asking for help goes against our nature but sometimes it's surprising how keen people are to offer a hand.

Codéine sometimes depresses your mood too which won't help

.

.

Positives to focus on.

You will eventually move, if not this bungalow there's another waiting

There are small changes you can make that will improve your situation.

Spring isn't too far away.

Erm you're not Prince Harry or Meghan Markle being criticised by people who don't know you.

You are loved

.

.

.

The thing is you've got plenty to be fed up about. You're doing remarkably well and stay upbeat a good percentage of the time you don't *have* to be relentlessly positive

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By *uriousscouserWoman
over a year ago

Wirral


"Would some kind of therapy help with your guilt?

I'm undergoing counselling at the minute but the NHS offers 6 sessions only. I've had 3 sessions and we've barely scratched the surface. It feels like 6 sessions is nowhere near enough unfortunately.

I challenge anyone who suddenly goes from abled to disabled not to feel like a massive burden on your family etc. Knowing lots of disabled people, it's almost a 100% feature unfortunately. "

Does your employer offer any sort of wellbeing program you can use? 6 sessions doesn't sound a lot with everything you have going on.

I can't imagine the stress of it all. I needed a bit of help when I was going through cancer treatment but I knew it was short term, which I suspect makes a big difference.

I would second the suggestion of a gratitude journal. Every evening I try to reflect on something good that has happened in the day.

Some days it's something big, other days it might be hearing a seagull call or remembering to put moisturiser on of a morning. I think the practice helps me over time to pick out those tiny little sparks of goodness when a day feels dark

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By *inky_couple2020 OP   Couple
over a year ago

North West

^^^Replying to all in one...

I don't want to take codeine, I hate the side effects but at the moment, I simply can't cope without it. The stuff I'm taking was prescribed 2yrs ago, which should show how desperate I am pain wise and how much I avoid taking it, but it's been taken x2 a day, every day since 13 Dec and there's no sign of it letting up

Re: EAP programmes, they won't accept a counselling referral while you have NHS counselling underway, nor do they keep it "open". I'll have to refer myself to them after the NHS stuff finishes, which I will do.

I've never really been a journaller/diarist, so that'll be something different to try.

At the moment, I've mainly been occupying my redundant time with reading ebooks about WW2 and the Holocaust. I'm definitely grateful that my Great Grandad made it to the UK before it all kicked off

Re: family time upstairs, there's limited space due to us being a 4 adult, 1 child household. Our daughter has come and done puzzle books with me for a bit and Mr KC has stayed to chat/hug between chores, but it's not especially practical to bring lots of stuff into our bedroom.

Also the upstairs TV only has Freeview, no internet connection and there's feck all on the telly

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By *olly_chromaticTV/TS
over a year ago

Stockport


"Lots of Fabsters know about my situation. We're still waiting to complete on our move to a bungalow and my disability issues have become worse in recent months. I've had to allow myself to take strong codeine for the first time in over 2 years just to cope with pain and it's becoming almost impossible to use the stairs.

So, I've spent all weekend living upstairs so that I can get to the bathroom. Obviously Mr KC is looking after me, bringing my meals upstairs etc. but I can't participate in family life from up here. Before Christmas, I kept myself positive in knowing we had our holiday and so I focused on that.

We don't really have any firm plans for this year because everything hinges on the house move, which we don't yet have dates for. It could be any time or it might still fall through. We don't want to plan trips or commit to anything substantial for obvious reasons, plus I have £4.5k to eventually repay my employer for my new wheelchair (NHS rejected me).

I'm struggling to find anything to focus on to keep me positive. Work is ridiculously stressful at the moment - I've been dragging my arse in and working extra hours because it's preferable to be near an accessible toilet than it is to go home. I eat breakfast at work because the café is wheelchair accessible and I don't have to worry about trying to move a bowl of cereal whilst hobbling on crutches. Everyone at work knows me and how to help me.

So, any contributions about how others maintain positivity in the face of adversity would be interesting to read about "

Anger. Pure white hot anger at the bastards running this country who have spent the past few years embezzling the money that belongs to the people. The money that could help not just you, but millions of others as well. Anger is what helps me cope with all the injustice. Anger and the hope that somehow, someday, there will be justice and the ones who have destroyed this country just to feather their own nests will get what they really deserve.

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By *ou only live onceMan
over a year ago

London


"^^^Replying to all in one...

I don't want to take codeine, I hate the side effects but at the moment, I simply can't cope without it. The stuff I'm taking was prescribed 2yrs ago, which should show how desperate I am pain wise and how much I avoid taking it, but it's been taken x2 a day, every day since 13 Dec and there's no sign of it letting up

Re: EAP programmes, they won't accept a counselling referral while you have NHS counselling underway, nor do they keep it "open". I'll have to refer myself to them after the NHS stuff finishes, which I will do.

I've never really been a journaller/diarist, so that'll be something different to try.

At the moment, I've mainly been occupying my redundant time with reading ebooks about WW2 and the Holocaust. I'm definitely grateful that my Great Grandad made it to the UK before it all kicked off

Re: family time upstairs, there's limited space due to us being a 4 adult, 1 child household. Our daughter has come and done puzzle books with me for a bit and Mr KC has stayed to chat/hug between chores, but it's not especially practical to bring lots of stuff into our bedroom.

Also the upstairs TV only has Freeview, no internet connection and there's feck all on the telly "

Quick win: you could definitely find lighter reading material!!

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By *inky_couple2020 OP   Couple
over a year ago

North West

^^^I find it interesting

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"^^^I find it interesting "

Not necessarily mood lifting though.

I know and understand how difficult it is especially when you're facing changes that you don't want that are being forced on you but...You have to work with what you have.

Who's the fourth adult, could they support the rest of you in any way?

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By *lephantisMan
over a year ago

Oxford

I'm so very sorry you are feeling this way. The first thing I would say is, try not to make things worse by what I call meta-guilt - feeling guilty about feeling guilty. Lots of people will say variations on the 'count your blessings' idea, and that I good advice, but not if it merely covers up the very understandable feelings you have at losing (much of) your independence, etc. Those feelings are absolutely valid. That doesn't help at all with those feelings, I kniw, but I hope it might help developing secondary negative feelings.

Second is simpler: hou have a wonderful husband, AND put yourself in his place. He is not feeling, as you do in your darkest moments, that you are a burden or asking too much of him. He is feeling as you would if the rôles were reversed - that he loves you till death do you part, hates what you are going through, and will do whatever he can to ease your pain.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"^^^I find it interesting

Not necessarily mood lifting though.

I know and understand how difficult it is especially when you're facing changes that you don't want that are being forced on you but...You have to work with what you have.

Who's the fourth adult, could they support the rest of you in any way?"

Son's girlfriend. She's either at uni or working. She's currently at work, won't be home till after midnight. She does help when she can, e.g. occasionally picks our daughter up from school.

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By (user no longer on site)
over a year ago

Oh Mrs KC, I'm so sorry to hear about your predicament and worsening mobility and pain. I can imagine you'd like to scream and howl every day with sheer frustration.

I'm glad to hear that a new, hopefully more accessible and suitable home is on the horizon

In the short term, until that finalises, how about some audio books to pass the time - if you get libby (free!) you can also access popular magazines (they have war related books too )

Is there any respite care that either of you can access?

Maybe hubby would like a pamper night -perhaps his favourite takeaway on a night that his favourite team are playing (if he is sporty) or a pamper bath?

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"^^^I find it interesting

Not necessarily mood lifting though.

I know and understand how difficult it is especially when you're facing changes that you don't want that are being forced on you but...You have to work with what you have.

Who's the fourth adult, could they support the rest of you in any way?

Son's girlfriend. She's either at uni or working. She's currently at work, won't be home till after midnight. She does help when she can, e.g. occasionally picks our daughter up from school. "

Do your son and his girlfriend do their own washing, cooking, clearing up etc?

I suggested to my dad that my brother stayed with him for a bit, he refused saying he couldn't look after him. My brother is 60 . I'm just illustrating that once more become adults it doesn't hurt to treat them as such.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"^^^I find it interesting

Not necessarily mood lifting though.

I know and understand how difficult it is especially when you're facing changes that you don't want that are being forced on you but...You have to work with what you have.

Who's the fourth adult, could they support the rest of you in any way?

Son's girlfriend. She's either at uni or working. She's currently at work, won't be home till after midnight. She does help when she can, e.g. occasionally picks our daughter up from school.

Do your son and his girlfriend do their own washing, cooking, clearing up etc?

I suggested to my dad that my brother stayed with him for a bit, he refused saying he couldn't look after him. My brother is 60 . I'm just illustrating that once more become adults it doesn't hurt to treat them as such. "

They cook for themselves at silly o'clock yes, generally tidy up but not always (which we've reminded them about). They do their own laundry. What I would like is more contribution to the general house upkeep that affects us all, e.g. cleaning the bathroom, hoovering the stairs etc. On Friday, I asked my son to clean the bathroom over the weekend. It's 16:30 Sunday and it's not yet done. I also don't have the patience or tolerance for the inevitable argument when I re-remind him

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

^^ once our kids become adults that should say

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"^^^I find it interesting

Not necessarily mood lifting though.

I know and understand how difficult it is especially when you're facing changes that you don't want that are being forced on you but...You have to work with what you have.

Who's the fourth adult, could they support the rest of you in any way?

Son's girlfriend. She's either at uni or working. She's currently at work, won't be home till after midnight. She does help when she can, e.g. occasionally picks our daughter up from school.

Do your son and his girlfriend do their own washing, cooking, clearing up etc?

I suggested to my dad that my brother stayed with him for a bit, he refused saying he couldn't look after him. My brother is 60 . I'm just illustrating that once more become adults it doesn't hurt to treat them as such.

They cook for themselves at silly o'clock yes, generally tidy up but not always (which we've reminded them about). They do their own laundry. What I would like is more contribution to the general house upkeep that affects us all, e.g. cleaning the bathroom, hoovering the stairs etc. On Friday, I asked my son to clean the bathroom over the weekend. It's 16:30 Sunday and it's not yet done. I also don't have the patience or tolerance for the inevitable argument when I re-remind him "

I understand.

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By *istyPeaksCouple
over a year ago

braintree

Oh honey. I do understand. Obviously I was fortunate and went the other way eventually.

But at my worst I felt such a failure. A 2 minute walk to the school took 20 and meant I had to return to bed for hours afterwards. The day I physically couldn’t get past my front gate and a passing mom (who I knew) literally took my daughter from me (kindly) was one of the worst days of my life. I felt so weak and pathetic. I think I cried that day. But it was also ultimately a good day. I reached out to a friend and took advice. I became mentally stronger. I used spoon theory & lists. When I was physically unable to move I would make lists of things that needed doing. Things I could do via phone. Things that would take 1 spoon or 2 spoons. Things I would not ever be able to do. And then I’d organise a timetable & rota. So even though I wasn’t physically doing anything I wasn’t doing nothing. I could make costumes & things for the kids from bed if my hands functioned. I could read with them. Do homework.

I know these things may not be relevant to you, but I did hit rock bottom & I have come out the other side. Possibly stronger. And the guilt has gone. I didn’t cause my body to fail. It wasn’t laziness or a lack of care stopping me from doing things. Life sometimes chucks shit at you. The trick is to not let it stick!!!

My inbox is always open hun - if you need to rant xxxx

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By *inky_couple2020 OP   Couple
over a year ago

North West

I just forced myself to have a shower and shaved my legs. Hurt like fuck but I feel a bit more presentable (sat here in knickers and an old maternity t-shirt )

Now thinking about planning a birthday party for our daughter to give me something to do/think about..... Am I nuts to attempt a DIY mug painting party for double digit numbers of 5 & 6 yo children?!

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By *avie65Man
over a year ago

In the west.


"I just forced myself to have a shower and shaved my legs. Hurt like fuck but I feel a bit more presentable (sat here in knickers and an old maternity t-shirt )

Now thinking about planning a birthday party for our daughter to give me something to do/think about..... Am I nuts to attempt a DIY mug painting party for double digit numbers of 5 & 6 yo children?! "

Double digit 5&6 year olds gawd you are nuts. I'm stressed just thinking about something like that.

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By *elix SightedMan
over a year ago

Cloud 8

Oh OP, life can be wanky, can’t it. I can’t begin to imagine your circumstances but, my own life has some minor parallels. I’ve been single for a year and live on my own, far away from friends and family. I have a very boring existence right now and sometimes it’s hard to find positives (I’m well aware this is nowhere near as bad as you have it x).

To combat that I think of one thing to do each week that is cheap/free, local, easy but interesting and fun. That way, every week I only have a few empty days to endure and I always have something to which I can look forward.

Can you organise in advance little trips? I’m only thinking something simple, especially given your mobility issues.

Are there any support groups relevant to what you’re dealing with?

Best of luck with the bungalow, you WILL get it!!

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By *inky_couple2020 OP   Couple
over a year ago

North West


"I just forced myself to have a shower and shaved my legs. Hurt like fuck but I feel a bit more presentable (sat here in knickers and an old maternity t-shirt )

Now thinking about planning a birthday party for our daughter to give me something to do/think about..... Am I nuts to attempt a DIY mug painting party for double digit numbers of 5 & 6 yo children?!

Double digit 5&6 year olds gawd you are nuts. I'm stressed just thinking about something like that. "

Last year, we did a DIY traditional party games thing with a ball pool we hired. And made little lunch boxes. We survived

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By *inky_couple2020 OP   Couple
over a year ago

North West

Oh and all support groups seem to meet on weekdays at something like 11:00, so working FT and going to support groups for disabled people seem not to go together

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By *avie65Man
over a year ago

In the west.


"I just forced myself to have a shower and shaved my legs. Hurt like fuck but I feel a bit more presentable (sat here in knickers and an old maternity t-shirt )

Now thinking about planning a birthday party for our daughter to give me something to do/think about..... Am I nuts to attempt a DIY mug painting party for double digit numbers of 5 & 6 yo children?!

Double digit 5&6 year olds gawd you are nuts. I'm stressed just thinking about something like that.

Last year, we did a DIY traditional party games thing with a ball pool we hired. And made little lunch boxes. We survived "

I hope you got a medal for courage and copious amounts of alcohol as a reward.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"I just forced myself to have a shower and shaved my legs. Hurt like fuck but I feel a bit more presentable (sat here in knickers and an old maternity t-shirt )

Now thinking about planning a birthday party for our daughter to give me something to do/think about..... Am I nuts to attempt a DIY mug painting party for double digit numbers of 5 & 6 yo children?!

Double digit 5&6 year olds gawd you are nuts. I'm stressed just thinking about something like that.

Last year, we did a DIY traditional party games thing with a ball pool we hired. And made little lunch boxes. We survived

I hope you got a medal for courage and copious amounts of alcohol as a reward. "

We don't really drink

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By *ehindHerEyesCouple
over a year ago

SomewhereOnlyWeKnow

I wish i had something to say that was a positive, I'd be utilising it myself.

Depression is kicking my arse right now and coupled with the mum guilt because I'm not giving the kids what they want/need doesn't help, im barely doing that for myself.

The only things I can suggest is something you've already mentioned which is to know when you need the help (meds) use it, and simple things like self care. And making small plans to complete to give you something to look forward to.

The bungalow WILL happen and when it does remind yourself how much better things are going to be, it's hard right now, but things WILL and ARE going to get better for you XX

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By *eroLondonMan
over a year ago

Mayfair

KC² — my promise of an 'Nduja Part II in London still stands.

I can offer you, at the very least, the miniscule of respites.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"I wish i had something to say that was a positive, I'd be utilising it myself.

Depression is kicking my arse right now and coupled with the mum guilt because I'm not giving the kids what they want/need doesn't help, im barely doing that for myself.

The only things I can suggest is something you've already mentioned which is to know when you need the help (meds) use it, and simple things like self care. And making small plans to complete to give you something to look forward to.

The bungalow WILL happen and when it does remind yourself how much better things are going to be, it's hard right now, but things WILL and ARE going to get better for you XX"

I'm sorry you are experiencing depression and that's its impacting your parenting. I have considerable empathy

Thank you for the thoughtful reply, it's really appreciated. I'm still on bed (have been all day) and now have to be quiet because daughter is in bed next door, so no radio on. She's been brilliant, coming upstairs to show me her new dances, doing her puzzle book with me and her reading book. She's very thoughtful.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"KC² — my promise of an 'Nduja Part II in London still stands.

I can offer you, at the very least, the miniscule of respites."

You can n'duja me again, but maybe indoors this time?!

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By (user no longer on site)
over a year ago

Have you booked another Spanish holiday for this year ? I know how much you enjoyed the last one.

Any concerts booked to look forward to ? Films ?

More 10k training when weather improves so you can hold me to that free lunch (at Greggs) ?

And I do believe the Bungalow move will happen, and that will make a big change.

Muchos abrazos Amiga x

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By (user no longer on site)
over a year ago

Gayle and I have had a very similar story. I don't want to go through it here but would love to chat privately. Do you need a mobility scooter? Gayle and Neil xxx please contact us x

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By (user no longer on site)
over a year ago


"Oh and all support groups seem to meet on weekdays at something like 11:00, so working FT and going to support groups for disabled people seem not to go together "

Dependant upon your employer, they may allow time for you to attend support groups. I've bee able to negotiate a flexible working arrangement because both my children are currently going through different traumas and need me to take them to their appointments.

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By *inkyInkedBiWoman
over a year ago

.


"I wish i had something to say that was a positive, I'd be utilising it myself.

Depression is kicking my arse right now and coupled with the mum guilt because I'm not giving the kids what they want/need doesn't help, im barely doing that for myself.

The only things I can suggest is something you've already mentioned which is to know when you need the help (meds) use it, and simple things like self care. And making small plans to complete to give you something to look forward to.

The bungalow WILL happen and when it does remind yourself how much better things are going to be, it's hard right now, but things WILL and ARE going to get better for you XX"

Can empathise with this.

When depression is grabbing me by the balls I just keep telling myself it’ll pass, it won’t be forever, it’ll pass, and it helps my panicky feeling.

Big hugs tinder

I wish I had any decent advice mrs Kc, sending huge love your way

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By (user no longer on site)
over a year ago

Hugs hopefully things go well

For me I lock myself away in the gym

And focus on other things

I know that can’t be the case for everyone

So sending hugs and hopefully you find a place soon

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Have you booked another Spanish holiday for this year ? I know how much you enjoyed the last one.

Any concerts booked to look forward to ? Films ?

More 10k training when weather improves so you can hold me to that free lunch (at Greggs) ?

And I do believe the Bungalow move will happen, and that will make a big change.

Muchos abrazos Amiga x"

Gracias, amigo

We didn't book any more trips, waiting to sort out the house first. I'd like to rejoin my Toldeo crew in Granada in July but won't book till we know what's what.

At the moment, my 10k situation is that you're dining like a king that day. I'm we well out of it! Defo need better weather....

Concert - Tenacious D in June, otherwise no other plans.

Thank you for your friendship

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Oh and all support groups seem to meet on weekdays at something like 11:00, so working FT and going to support groups for disabled people seem not to go together

Dependant upon your employer, they may allow time for you to attend support groups. I've bee able to negotiate a flexible working arrangement because both my children are currently going through different traumas and need me to take them to their appointments. "

Currently taking time one morning to go to counselling. Although it's at 10am, by the time I'm able to start work, I've lost the whole morning.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Gayle and I have had a very similar story. I don't want to go through it here but would love to chat privately. Do you need a mobility scooter? Gayle and Neil xxx please contact us x"

I don't think a mobility scooter would help, no. Once I'm out of our (totally unadapted) house, and can use my wheelchair, I'm pretty well able to do what I want, although currently, my pain is making even that a challenge.

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By *eroLondonMan
over a year ago

Mayfair


"KC² — my promise of an 'Nduja Part II in London still stands.

I can offer you, at the very least, the miniscule of respites.

You can n'duja me again, but maybe indoors this time?! "

•

Oh, you wish to be ensconced?

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By *oubleswing2019Man
over a year ago

Colchester


"I challenge anyone who suddenly goes from abled to disabled not to feel like a massive burden on your family etc. Knowing lots of disabled people, it's almost a 100% feature unfortunately. "

This.

Most disabled people with chronic conditions say they they've grown in time to mostly accept their condition.

But the biggest pain I hear time and time again is not how it affects them, but their loved ones and family.

As well as carrying the condition, they feel extremely guilty that their loved ones experience the condition by proxy.

All I say to KC, is think from time to time on the things you can do, that give you joy and happiness, and not the things you cannot.

/hug x

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By (user no longer on site)
over a year ago

There is a book called A Still Life by Josie George, a lady who has many of the same challenges as yourself and it has excellent reviews. I have bought it for my daughter to read so havnt had chance myself but I have read some of her stuff online and it is beautiful and inspiring.

Your bungalow WILL happen. X

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By *inky_couple2020 OP   Couple
over a year ago

North West

Update: the pain in my left leg, hip and back is the most excruciating it's ever been. It seems to be linked to something ovarian but apparently that's not urgent and I just have to wait for my next gynaecology appt. Six months. I'm off work because I can't get up and down stairs to get out at the moment. I'm not entirely clear what I'm supposed to do if it carries on like this. Do they expect me to live in bed, in agony, for six months??

Rant over

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By *ou only live onceMan
over a year ago

London


"Update: the pain in my left leg, hip and back is the most excruciating it's ever been. It seems to be linked to something ovarian but apparently that's not urgent and I just have to wait for my next gynaecology appt. Six months. I'm off work because I can't get up and down stairs to get out at the moment. I'm not entirely clear what I'm supposed to do if it carries on like this. Do they expect me to live in bed, in agony, for six months??

Rant over "

Feel free to rant, KC! No words of advice - it just sounds horrible, but many words of support! I hope the pain eases up and/or you get an appointment much more quickly!

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By *ad NannaWoman
over a year ago

East London

Firstly, I commend you for being strong in such circumstances.

Now, how I manage to keep on top of my desire to quit on everything is to remind myself that I was lucky.

Lucky because my twin sister, who was born second, was the one starved of oxygen because they didn't realise my mum was carrying twins, and causing her cerebral palsy due to brain damage.

I've felt immense sadness throughout my life at her not having the opportunities I've had, and not having a "normal" relationship with her because she couldn't walk or communicate.

So, at my lowest, most difficult times I give myself a mental shake, do some deep breathing and be grateful I have a life.

I really hope everything goes smoothly for you with the house move x

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"Update: the pain in my left leg, hip and back is the most excruciating it's ever been. It seems to be linked to something ovarian but apparently that's not urgent and I just have to wait for my next gynaecology appt. Six months. I'm off work because I can't get up and down stairs to get out at the moment. I'm not entirely clear what I'm supposed to do if it carries on like this. Do they expect me to live in bed, in agony, for six months??

Rant over "

If it helps keep ranting.

How has it got to the stage where a young woman with a family is housebound (preventably) and it isn't urgent?

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Firstly, I commend you for being strong in such circumstances.

Now, how I manage to keep on top of my desire to quit on everything is to remind myself that I was lucky.

Lucky because my twin sister, who was born second, was the one starved of oxygen because they didn't realise my mum was carrying twins, and causing her cerebral palsy due to brain damage.

I've felt immense sadness throughout my life at her not having the opportunities I've had, and not having a "normal" relationship with her because she couldn't walk or communicate.

So, at my lowest, most difficult times I give myself a mental shake, do some deep breathing and be grateful I have a life.

I really hope everything goes smoothly for you with the house move x"

I'm trying to focus on the positives. It was very hard yesterday, probably because I'd sat in my wheelchair in A&E for 19hrs overnight. It was impossible to nap or sleep in the chair and only metal chairs in the waiting room, which I cannot sit on. I was exhausted, mentally and physically and when the A&E staff agreed that it was probably ovarian in origin and it was evident I was in excessive pain, they "cannot perform ultrasound scans in A&E, this can only be done as a gynaecology inpatient and you don't meet the criteria to be admitted".

They then suggested various painkillers that I'd already explained I cannot take due to allergy or history of gastric ulcers and then they suggested increasing my Pregabalin (for nerve pain) despite me explaining I cannot because higher doses caused me to have liver dysfunction. That was it.

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

^^jesus effing Christ!

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By *ad NannaWoman
over a year ago

East London

People underestimate just how debilitating and depressing chronic pain can be. You miss out on experiencing even the smallest of life things, because you're busy trying to cope with the pain.

I've had medium level hip and back pain for a few months and it's grating on me now. I wake up with a burning pain in my right hip, and when I walk or stand for 10 minutes my right leg goes numb from the bum cheek down. Nowhere near the pain you must be experiencing, and you have my heartfelt sympathy.

Keep going, and rant all you want.

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By *ad NannaWoman
over a year ago

East London


"Firstly, I commend you for being strong in such circumstances.

Now, how I manage to keep on top of my desire to quit on everything is to remind myself that I was lucky.

Lucky because my twin sister, who was born second, was the one starved of oxygen because they didn't realise my mum was carrying twins, and causing her cerebral palsy due to brain damage.

I've felt immense sadness throughout my life at her not having the opportunities I've had, and not having a "normal" relationship with her because she couldn't walk or communicate.

So, at my lowest, most difficult times I give myself a mental shake, do some deep breathing and be grateful I have a life.

I really hope everything goes smoothly for you with the house move x

I'm trying to focus on the positives. It was very hard yesterday, probably because I'd sat in my wheelchair in A&E for 19hrs overnight. It was impossible to nap or sleep in the chair and only metal chairs in the waiting room, which I cannot sit on. I was exhausted, mentally and physically and when the A&E staff agreed that it was probably ovarian in origin and it was evident I was in excessive pain, they "cannot perform ultrasound scans in A&E, this can only be done as a gynaecology inpatient and you don't meet the criteria to be admitted".

They then suggested various painkillers that I'd already explained I cannot take due to allergy or history of gastric ulcers and then they suggested increasing my Pregabalin (for nerve pain) despite me explaining I cannot because higher doses caused me to have liver dysfunction. That was it. "

Oh my word, I don't know how you didn't have a melt down.

I'd have been begging for morphine.

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By *inky_couple2020 OP   Couple
over a year ago

North West

Oh, and when I asked about getting my Pregabalin whilst waiting (I missed two doses), the answer was no. I'd gone to A&E straight from work and had nothing with me.

And the one accessible toilet open in the hospital overnight had urine all over the floor and spit on the seat. Because I use a wheelchair and my hands have to touch them, I didn't want to go into the toilet. I eventually persuaded a security guard to open up another toilet outside if A&E (which didn't flush). He explained that other toilets on hospital corridors are locked after to prevent homeless people from sleeping in them.

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Firstly, I commend you for being strong in such circumstances.

Now, how I manage to keep on top of my desire to quit on everything is to remind myself that I was lucky.

Lucky because my twin sister, who was born second, was the one starved of oxygen because they didn't realise my mum was carrying twins, and causing her cerebral palsy due to brain damage.

I've felt immense sadness throughout my life at her not having the opportunities I've had, and not having a "normal" relationship with her because she couldn't walk or communicate.

So, at my lowest, most difficult times I give myself a mental shake, do some deep breathing and be grateful I have a life.

I really hope everything goes smoothly for you with the house move x

I'm trying to focus on the positives. It was very hard yesterday, probably because I'd sat in my wheelchair in A&E for 19hrs overnight. It was impossible to nap or sleep in the chair and only metal chairs in the waiting room, which I cannot sit on. I was exhausted, mentally and physically and when the A&E staff agreed that it was probably ovarian in origin and it was evident I was in excessive pain, they "cannot perform ultrasound scans in A&E, this can only be done as a gynaecology inpatient and you don't meet the criteria to be admitted".

They then suggested various painkillers that I'd already explained I cannot take due to allergy or history of gastric ulcers and then they suggested increasing my Pregabalin (for nerve pain) despite me explaining I cannot because higher doses caused me to have liver dysfunction. That was it.

Oh my word, I don't know how you didn't have a melt down.

I'd have been begging for morphine.

"

I asked for it. I received 60mg codeine instead. It barely takes the edge off unfortunately.

A&E stated they were unwilling to prescribe opiates.

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By *ou only live onceMan
over a year ago

London


"Update: the pain in my left leg, hip and back is the most excruciating it's ever been. It seems to be linked to something ovarian but apparently that's not urgent and I just have to wait for my next gynaecology appt. Six months. I'm off work because I can't get up and down stairs to get out at the moment. I'm not entirely clear what I'm supposed to do if it carries on like this. Do they expect me to live in bed, in agony, for six months??

Rant over

If it helps keep ranting.

How has it got to the stage where a young woman with a family is housebound (preventably) and it isn't urgent?"

Yep. This whole thread is a damning indictment of the state we're in.

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By (user no longer on site)
over a year ago


"Lots of Fabsters know about my situation. We're still waiting to complete on our move to a bungalow and my disability issues have become worse in recent months. I've had to allow myself to take strong codeine for the first time in over 2 years just to cope with pain and it's becoming almost impossible to use the stairs.

So, I've spent all weekend living upstairs so that I can get to the bathroom. Obviously Mr KC is looking after me, bringing my meals upstairs etc. but I can't participate in family life from up here. Before Christmas, I kept myself positive in knowing we had our holiday and so I focused on that.

We don't really have any firm plans for this year because everything hinges on the house move, which we don't yet have dates for. It could be any time or it might still fall through. We don't want to plan trips or commit to anything substantial for obvious reasons, plus I have £4.5k to eventually repay my employer for my new wheelchair (NHS rejected me).

I'm struggling to find anything to focus on to keep me positive. Work is ridiculously stressful at the moment - I've been dragging my arse in and working extra hours because it's preferable to be near an accessible toilet than it is to go home. I eat breakfast at work because the café is wheelchair accessible and I don't have to worry about trying to move a bowl of cereal whilst hobbling on crutches. Everyone at work knows me and how to help me.

So, any contributions about how others maintain positivity in the face of adversity would be interesting to read about "

Unfortunately life can test us at times I personally feel a lot can be based on experience a brief example of mine at the ripe age of 29 my life changed I became paralysed due to a road accident. Now at 44 life still can be a struggle but I know things will change day by day. Being determined can be useful. But the biggest and most powerful skill to have is the ability to sit with any of your feelings especially negative ones. It takes time to master this but I swear by it I hope this helps you in one way or another eddie

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By *inky_couple2020 OP   Couple
over a year ago

North West


"Lots of Fabsters know about my situation. We're still waiting to complete on our move to a bungalow and my disability issues have become worse in recent months. I've had to allow myself to take strong codeine for the first time in over 2 years just to cope with pain and it's becoming almost impossible to use the stairs.

So, I've spent all weekend living upstairs so that I can get to the bathroom. Obviously Mr KC is looking after me, bringing my meals upstairs etc. but I can't participate in family life from up here. Before Christmas, I kept myself positive in knowing we had our holiday and so I focused on that.

We don't really have any firm plans for this year because everything hinges on the house move, which we don't yet have dates for. It could be any time or it might still fall through. We don't want to plan trips or commit to anything substantial for obvious reasons, plus I have £4.5k to eventually repay my employer for my new wheelchair (NHS rejected me).

I'm struggling to find anything to focus on to keep me positive. Work is ridiculously stressful at the moment - I've been dragging my arse in and working extra hours because it's preferable to be near an accessible toilet than it is to go home. I eat breakfast at work because the café is wheelchair accessible and I don't have to worry about trying to move a bowl of cereal whilst hobbling on crutches. Everyone at work knows me and how to help me.

So, any contributions about how others maintain positivity in the face of adversity would be interesting to read about

Unfortunately life can test us at times I personally feel a lot can be based on experience a brief example of mine at the ripe age of 29 my life changed I became paralysed due to a road accident. Now at 44 life still can be a struggle but I know things will change day by day. Being determined can be useful. But the biggest and most powerful skill to have is the ability to sit with any of your feelings especially negative ones. It takes time to master this but I swear by it I hope this helps you in one way or another eddie"

Thank you Btw, love your bottle carrying solution on your chair! Would you like details of the cup holder I have on mine? It's brilliant.

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By *inky_couple2020 OP   Couple
over a year ago

North West

I absolutely detest being reliant on other people

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