To feel like I can’t take much more

[outherealone]

This is a bit of a self pity rant but I feel like I need to offload tonight.
I have chronic pain. I’ve had pain since my teens and am now nearing fifty and my condition has worsened. I’m a single mum and working. when my condition is at its worst I struggle to even stand up. each day is a chore. Sometimes unbearable.
I have to wear my hair in a bun most days as I don’t even have the strength to brush it.
I’m often unwashed for days, using copious amounts of deodorant and I sometimes don’t do laundry for months, buting the kids new socks and pants. I occasionally outsource washing but it costs a fortune!
I have so many odd jobs around the home which I’m quite capable of doing but anything extra added to my day just knackers me out.
I often take the kids for food at our local pub or buy them sandwiches and ready meals or takeaway as cooking is such a chore and I can’t afford any of those things.
I can’t come to terms with what’s happened to my body. I can’t lose weight. I used to be slim and run and active and now to put one door in front of the other hurts. I feel physically and mentally heavy. I really don’t want to carry on but I have to as a responsible mum.
I struggle to share this in real life as I present as well and capable. When I do share it with people I feel like I’m one of those dire and boring complainers and I feel judged because there are periods where I’m very active and capable and people comment sometimes snidely about how my disability doesn’t hold me back from things I enjoy but it really does hold me back and people only see me when I’m capable of going out or when I have no choice because of work and children.
My kids’ dad has them fifty fifty and I have no other support as no family nearby and friends are lovely but nobody’s in a position to offer practical help. I pay for a cleaner which I can’t really afford but it gives us a better quality of life but I struggle to cook and to play with my kids or have any energy for anything other than work.
I have fatigue issues too and sleep problems which all exacerbate everything else. My medication dopes me up completely and I have weight issues which are hormonal, age related but also attributable to the various drugs I’ve used for pain and mood management over the years.
It impacts on all my friendships and relationships and makes work really difficult. Despite having a partner (longish distance) I feel completely alone.
I’m having therapy for trauma (ptsd from an accumulation of stuff) and we are going to start looking at how I can come to terms with this as at the moment I’m hating myself and my body that I don’t recognise and can’t do anything to change. Today has been the worst in a long time, I just keep thinking if this is it I don’t want to be here as ageing is just making everything worse. I would never kill myself or even try to because of my children but I also don’t know how to carry on anymore.
Thank you if you got that and thank you for joining my pity party!

I should add, my kids’ bedsheets have not been changed for probably a year. They’re clean and fed and I try really hard to give them all the love and attention they need but I’m constantly letting them down. I’m lucky their dad is very active and they do a lot during their time with him.
This weekend I mainly neglected them because I just needed to lie down and left them to their own devices. There’s always food they can easily access if I’m really struggling but it feels pretty shitty for them too.

As a fellow sufferer of chronic pain, I can completely understand where you are coming from. I often say that I am too disabled to lead a normal life, but not disabled enough to receive any actual help or support. I often get told 'but you look fine' or 'but you managed to do this the other day' and it makes me want to scream.

Do you use the spoon theory to help pace yourself?

Oh jollitwiglet! Thank you for responding and for understanding. I’m sorry you are a fellow sufferer / warrior. I do kind of use the spoons method but could probably do with a reboot! I’ve been to a few Nhs courses and workshops ref pain and management thereof which includes pacing... i tr6 really hard t9 pace and say no to non essential stuff but no matter how much I pare things down it doesn’t alleviate anything! There’s no bloody rhyme nor reason to it!

'but you look fine' @Jollitwiglet, a constant refrain, people see me out on a good day and presume I’m cured. I feel guilty and dishonest when I’m living my best life and I feel guilty when I’m too ill to achieve or interact and 8 feel dishonest when asking for help with things I can’t manage because they’re too risky in terms of causing flare ups. I can’t stop gaining weight either which depresses me even more.

Thing with pacing is it's so difficult to stick to. Plus when you're fatigued and feel like you're made of lead and wading through custard, even the smallest of tasks feels like an impossibility. I just wish there was a magic pill we could take that could make it all better! Or just a pill without side effects that made things even a little better would be a good start

It sounds really really hard. How old are the children? I have a disability and it was much harder physically when my kids were young. Now they’re teenagers they can do a bit of laundry and cooking, and there’s a bit less pressure on me. Less guilt. Will yours be old enough for that kind of thing soon?

@cardsforkittens they’re still in primary school. They’re so beautiful. They have learned to fend for themselves on my off days and I’ve instilled a lot of independence into them from a young age which I hate but it’s necessary. Cue many, many occasions of spilt milk !
They were both crying tonight as I was not pleasing them with my dinner choices and I snapped and went into a bit of a rant about my disability and I really hurt because I see how much it impacts on them. Worse still they both exhibit some similar symptoms and daughter already has a diagnosis of a milder form of one of my conditions and I worry that she’s sometimes aping my symptoms in order to gain attention. I don’t want to raise them in a sick household and I don’t want my illness to define them.
I’m glad you’re having some respite from chores now yours are older. I look forward muchly to that day!

How old are your DC? Could u talk them through task such as changing their bed sheets? Are they old enough? Sorry you are having a hard time. You are clearly doing your best and that's all anyone can ask. Its hardwork raising children when u dont have health issues.....how well do u get on with their dad. Could he take washing with him to do at his and send back ready to go when they are with u. Its acting in the best interests of the children not doing a favour to u. Dry shampoo can be amazing if u cant wash your hair.

@Jollitwiglet, everything you’ve said! Made of lead is exactly how i feel. Yes side effects are so hard to bear too!

@Halo1234 , we have a good enough relationship, that’s something to consider. And great idea re bedding for the kids, part of my issue is they’re cabin beds and I struggle to get up and down!

@Halo1234 and thank you for your kind words. I have very curly hair and dry shampoo just makes it look worse!

Total sympathy! That’s awful and must be really hard. Though nothing concrete to add.

@aagh that made me smile thank you 😊

Have you had your bloods done recently? Just wondered if you needed some extra vitamins or a change in medication. Probably worth speaking to your doctor about, explain how bad the fatigue and the pain is and find out if there is anything else that will help.

I appreciate that it must be hard not having the energy for the children but even just listening to them read or chatting to them will help.

And they can definitely change the beds with you explaining how to do it.

Thinking of you

@wannabe I haven’t had them done since I got my diagnosis five odd years ago.
I called the dr earlier but couldn’t get through and I don’t know what purpose another appointment would serve. It’s been suggested to get a check for vitamin deficiency but when I asked before was just told to buy my own and try it. But I have trialled shitloads of supplements and I have no idea what I’m doing or what I need to boost or substitute etc! So I want to ask again but I get so sick of being looked at like I’m a hypochondriac and I have been reduced to tears more than once in the surgery asking for extra support. I don’t know how to ask for the tests again. When I was tested before and they found autoimmune disease they never tested for any deficiency and to me, that should be one of the first things to eliminate!

It sounds like you need some more help. How old are you kids? Have you got nobody that could help you out. Not doing laundry and not washing for such long periods is very worrying. Is there anyway you could afford to pay your cleaner to do some for you.
Are you kids able to help at all or are they too little?

@WannabeGilmoreGirl thanks for your kind words too. I’m beating myself up constantly which can’t be helpful, I really want some tlc of some kind of fairy godmother, I really lucked out on family!

@PickedByYou I really need more help. My heart is breaking because I’m really seeing how alone I am now.
I had an enabler before and her recommendation was to get a cleaner which is where my dla money goes. Maybe I’ll ask her re other chores, she’s lovely and very understanding as a single mum.

Could you get a cleaner in once per week just to do a once over, wash the bedding and make up the beds and hoover around and wipe down a few surfaces and do the washing up.

I have arthritis. The last few days with all the rain has made it return with a vengeance. I am normally ok when it is hot and sunny.

I have got to a point that I can’t cope anymore with the house work so am getting a cleaner. I especially find making beds and putting duvets on the bed really painful

As a side note, for 7 years I was in constant pain. I went for physio every fortnight and saw a consultant at a specialised hospital every 3 months.

The pain didn’t go away. It just got worse.

I finally when I went back to my doctor because I was desperate. I wasn’t sleeping because of the pain.

I was referred to a private osteopaths clinic who within 15 minutes diagnosed me correctly and it was a long journey but led to my recovery

for you.

Two suggestions in addition to my sincerest sympathy:

Change your cleaner to someone who is willing to help with odd jobs that are needed. Changing sheets, wiping cupboards, ironing, laundry, cleaning, whatever needs doing.

Is there a hydrotherapy pool nearby for you? I find warm water amazing for pain.

I used to use lots the nhs hydro pool but I’m not as disabled now as I was then.
I think I can ask the cleaner to do anything, she can say no if she doesn’t want to do it but she is really good and kind. she’s done other odd bits in the past. I don’t want to lose her because I’ve had some shitty ones before.
Glad you got a decent diagnosis @Oliversmumsarmy I’m definitely better in summer. I lose months of my life toboain and fatigue in the winter. I had my first ever flu jab two weeks ago and wondering if it’s causing this extreme flare up now.

That is so hard for you.

Your XH had kids with you knowing your condition. If you were still married he would have to be supportive step up more with chores. He should be sending them home with clean clothes and also doing at least 50/50 for the buying and cleaning of school clothes etc., so I would definitely reassess whether he is doing at least his share for the sake of his kids.
How is the 50/50 split? It’s usually difficult for both parents to get the same amount of weekdays versus weekends. Maybe revisit this so you can have more downtime when you aren’t working, to catch up on rest and chores and then once in a while take a holiday with the kids, away somewhere that you don’t have to do housework, such as a relatives, where you can just spend time with them.
When the kids get bigger they can definitely help with laundry. If you have a dryer you don’t have to hang stuff up so that might be a good investment.
I think that’s really bad that you haven’t had bloods done in 5 years when your condition is deteriorating!
You must make an appointment and be insistent, because there are new medicines called biologics that have been approved during that time for autoimmune conditions.
Many people on these new types of medicine don’t need painkillers anymore.
If your GP isn’t keeping up with the times then you could be missing out.
I am not in the UK anymore but the impression is that with the NHS it’s the people who are prepared to be determined and insistent that get the best treatment. Get back to the doctor and get the best treatment available, for the sake of your kids.
Wishing you better days.

Thank you for the lovely flowers @Kiwiinkits

I suffer from severe mental health problems (general anxiety being one) because I get my son to school and back again I get well it really can't be that bad.

I have to do it because I don't have a choice, so I completely understand where you are coming from on that and it gets to you. DS is also fairly independent because on my off days he has had to fend for himself. Massive hugs for you

Hi op, your post resonates with me a lot.
I have had chronic pain for the last 14 years since I was 27, ds was 2 at the time and I was on my own with little support and his dad having him once a week.

I was diagnosed with fibromyalgia, CFS, anxiety, OCD and more recently this year at the age of 41, ADHD.
I always say I’m sick and tired of feeling sick and tired!

My once spotless home is now a shit tip! I just don’t have the energy any more. Ds is now 16, was diagnosed with Aspergers when he was 8 and is a great kid but stresses the life out of me. I also have an 8yr old dd who I suspect also has ADHD.

I hear you. Just wanted to let you know that.
I constantly “clock watch” for my meds, have put loads of weight on and don’t sleep. It’s bloody hard isn’t it?

I’m happy to be a buddy if you want this could be a support thread? People don’t understand how pain affects us. My whole life revolves around pain and I’m constantly looking at ways to relieve it. Meditation on YouTube has been quite good for me.

Wishing you well