Mobility issues, feeling hopeless

[Leenie0811]

Hi everyone,

I’ve been struggling since last year with my mobility and it keeps getting worse, especially with shielding I feel like now when I try and leave the house it’s increasingly difficult. I experience pain every time I go out and it’s leading me to live a life indoors slowly cutting myself off from the outside. Our recent heat wave in the U.K. made me very poorly with lots of pain and fatigue. I want to be able to try and help myself but don’t know where to start.

I used to be so active before my symptoms started and over the years I’m getting less and less active, it’s affecting my mental health and I don’t want to end up in a place where I’m not able to do anything anymore. Even housework has got so hard to do I have to take lots of breaks and find myself exhausted at what used to be a simple task.

Can anybody help with finding a way to become more active without putting yourself in bed for the next few days?

Leenie x

[Willow1414]

Dear Leenie0811

Sorry your struggling , if your pace yourself and don’t over do it even if you feel you can . This can be helpful . Always remember that there is always another day , be easy on yourself . Look after yourself, try to eat healthy . I found that going to bed early helped me , has I struggle the most in a morning with the joint pain .

Hope the above helps .

🦋❤️

[Leenie0811 in reply to Willow1414]

Thank you willow1414 I’ve been taking it easy today and started to eat a bit better than I have been. I think sleep is the key one isn’t it? Thing is I feel like I’m always sleeping these days but there must be a need for it. Early nights are my thing too I’m so hopeless and slow on a morning 😞 Even having a shower earlier I could feel the pain in my legs and feet, I wasn’t in there long and now I’m back in bed resting again.

Life seems to be completely unfair at times but praying for better days 💛

[Tiggywoos]

Oh Leenie I feel for you so much . Lots of us on here used to be really active and can’t be anymore so please don’t feel alone .You’ll get lots of good advise I’m sure but I find that breaking down tasks has helped a little . I try and prepare food in advance when I feel ok and never do too much cleaning in one go .

Pain is a tough one .. is it worth speaking to your GP about a review of pain relief meds so that when you do go for a walk the pain is more manageable?

I’m sorry I don’t have a magic wand 🪄 but your post resonated with me .

Sending you big hug and the biggest bit of advice I’ve picked up from here is to be super kind to yourself ❤️xxx

[Leenie0811 in reply to Tiggywoos]

I’m 28 years old and I feel like I have the body of a little old lady most days, my Nanna can do more than me in a day and I know we shouldn’t compare but surely this isn’t right? I do break down my tasks into little things to do with lots of breaks, I find myself sat up in bed or laid on the sofa more than anything these days... it feels like I’m too much to take anywhere for a long period of time because of the pain or I’m too tired. It’s becoming so lonely and it’s horrible 😞

Yeah I take tramadol every day so I have two 12 hour slow release tablets and then have 3 normal ones I can take on top. I limit the 3 extra unless I absolutely have to because I don’t like the meds in my body and don’t want to become totally reliant on them. Thank you so much for your kind words and yeah kindness to yourself is always the hardest, I’m well known for giving myself a hard time xxx

[Tiggywoos]

I also had severe endo like you and found that going gluten / dairy / free helped my stomach to feel better . Don’t underestimate the exhaustion associated with it.. It used to feel like walking through treacle . Take care xxx

[Spanielmadlady in reply to Tiggywoos]

I've recently gone dairy free and it's made a big difference to my stomach.👍 xx

[Tiggywoos in reply to Spanielmadlady]

Brilliant ! The milks are so good . Barista Oat is lovely in coffee adds some sweetness . Asda do lovely almond yogurts “beleaf” . Dairy free pure sunflower spread makes lush flapjacks 😂😋😋xx

[Spanielmadlady in reply to Tiggywoos]

I like tesco oat milk and lactose free greek yogurt .i find cathedral city LF cheddar and Phil the nicest cheeses.ive not changed spread as I use original flora anyway which is dairy free.swedish glace ice cream gets the thumbs up too. Xxx

[Tiggywoos in reply to Spanielmadlady]

Ooh didn’t know you could get lactose free Greek😋? I’ll be off to get some of that later ! X

[Spanielmadlady in reply to Tiggywoos]

Tesco also do plain think its £1.40

Greek yogurt

[Leenie0811 in reply to Tiggywoos]

Oh the endo pain is the worst! I’m in bed when that flares up and nothing gets rid of it just have to hope and prey it doesn’t last for too long. Yeah I’m plant based so I don’t eat meat and dairy so I have all the plant milks etc. I used to use processed meat alternatives but recently changed to natural ones to try help with stomach issues. My diet is so healthy with lots of fruit and veggies, my brother calls me a health freak but it does help a bit. I’ve been told I have a gluten sensitivity but it’s mild so I try and avoid gluten. It’s hard being so restricted with food but at least oat milk is super yummy 😋 xxx

[Tiggywoos in reply to Leenie0811]

Honestly Leenie I don’t think you give yourself enough credit as it sounds like you try really hard to stay well !I’m sure you do this already but I used to find that gentle stretching would help but I understand that when pain goes off the scale all you can do is try to breathe (I tell myself it’s ok you won’t die 🤦‍♀️) . Acupuncture worked so well on bladder but it was too expensive to keep it up regularly. Any time you feel you need to sound off just send me PM .

Hope today is an ok today 🪄🧚‍♀️. Take care xx

[Leenie0811 in reply to Tiggywoos]

Yeah I do give myself a hard time there’s always something I could do better and really need to focus on being kinder to myself. That motivated and determined attitude hasn’t left me so resting is very hard. I might look into getting some acupuncture see how it all works but yeah when the price is too much it’s so annoying. Today hasn’t been too bad, been focusing on getting enough sleep and listening to my body more so I can rest. Also been on YouTube looking at easy meals and made a lovely veggie pasta tonight. Cooked too much so lunch is sorted tomorrow! Thanks again for all your advice xxx

[Spanielmadlady]

Hi hun.make things as easy as possible for yourself. Like tiggy I make parts of meals like spag bol,chilli sauces etc earlier in the day or put meals in the slow cooker you can just chuck in and forget about it until teatime 👍 .when my hands are sore I use pre cut or frozen veg,microwave rice and iceland frozen mash is lovely with butter.. all saves lifting heavy pans and reduces the time stood standing cooking . eating well is really important .pacing yourself is a big must..I set myself a task of the day. I need to dust so I might make that todays task 🤔 but that's all I will do apart from taking the dogs out after that rest on the sofa with some crochet if I can keep my eyes open that is .I'm currently in sleep mode but I'm due my b12 Injection.i took the dogs out yesterday morning came home pegged the washing out and was asleep by dinnertime 🙄 despite going to bed before 9.30 pm and sleeping all night 🤷‍♀️ .stay out of the sun as that will also make you feel worse.if I go out without all the usual precautions I end up with a couple of bad days.have you contacted your rheumatologist? ....... your meds may need tweaking.im prescribed pregabalin for the pain in my hands and feet and that has made a big difference to me ...I've ran out of it a couple of times and boy did I know it . Big hug 🤗

[Leenie0811 in reply to Spanielmadlady]

My pain management at the moment is slow release tramadol I take it twice a day and can top up with 3 normal tablets in between. I try not to take the 3 extra if I can and leave them for days when I’m actually out of the house, although that’s getting less and less because everyone doesn’t want me to be in pain but it’s very lonely. Aww I wish I had a little dog to keep me company, I live alone and it would be lovely but I’m not sure if I am allowed a pet as it’s a rented property!

Thanks for the good meal prep ideas I didn’t think of making sauces etc or part making meals, I have an air fryer I recently bought which is a great addition to my kitchen and I love the idea of frozen or pre cut veggies! I do have frozen fruit and veg so they last longer I might have to get a bit more inventive with them haha.

I usually have to get a chair when I’m cooking so I can sit down if I’m standing and keeping an eye on something cooking on the hob, it’s all these little things that add up isn’t it? Xxx

[Spanielmadlady in reply to Leenie0811]

I m on my own as well apart from 1 teenager and 2 dogs.they are my company most of the time and whilst I struggle out sometimes they make me move .it was hat and coat on and down to the beach this morning. I sit down to peel and cut fresh veg too.ive managed to dust downstairs today upstairs can wait until tomorrow.i will often make a chilli sauce in a morning to reheat later after the college run leaving just rice to sort out .things like the frozen jackets are handy grated cheese is a godsend xx

[Leenie0811 in reply to Spanielmadlady]

Yeah when I had my dog she was the best company and really knew when I was flaring up, so comforting to have a pet around I really do want one! It’s good to get out and about with them as well so you’re not staying in all the time like I am at the moment. I’ve managed to wash my dishes and I think I’ll Hoover the rugs today, dust the apartment and fold my clean clothes. If I can do that I’ll be happy and omg it’s such a godsend having a chair when cooking I dunno what I would do if I didn’t have my dining table now! Never use it apart from one chair to aid cooking haha xxx

[Spanielmadlady in reply to Leenie0811]

Take it easy im sure one or two of those jobs can be done tomorrow. Xx

[Tiggywoos]

Never thought I’d hear myself saying this words but housework is a tad overrated 😉😁.. (I used to be a cleaner ) 😂. Hope today is better for you lovely ❤️X

[Spanielmadlady in reply to Tiggywoos]

Definitely the world isnt going to end of it doesnt get done x

[Tiggywoos in reply to Spanielmadlady]

Yes and no one really notices other than you who’s done it 🤣

[Leenie0811 in reply to Tiggywoos]

As long as the place is tidy I’m generally okay, I’ll keep on top of the dishes mainly and try do my washing. The floors need sweeping and mopping but that’s exhausting at the moment. The joys of living in an apartment with wooden floors! Xxx

[Pumpkin2009 in reply to Tiggywoos]

Tiggywoos, Thank you for saying that and making my day. Recently my college roommate can to visit and I spent so much time stressing about it and trying to restore some order to the house. I got through the lovely visit only to be worn out and feeling so ill for days after. The good news, she didn't know I put myself through all that and what happened after she left.

Healing hugs.

[Leenie0811 in reply to Pumpkin2009]

Aww lovely I feel for you putting yourself through that but I would be the same if someone came to visit me. I don’t know why we do it but there’s just a compulsion to make everything nice when visitors come! Sending hugs xxx

[Tiggywoos in reply to Pumpkin2009]

Oh Pumpkin …I bet your friend was so happy just to have your company she wouldn’t worry about a bit of mess ! We’re terribly hard on ourselves aren’t we ….. and some one gave great advice earlier .. just because you feel ok don’t go mad and overdo it !!!!!!I think this lovely little group is full of perfectionists ❤️👯‍♀️. I think when we can’t control our health we feel a little better knowing that other things are tidy and in order .

Returning a lovely healing hug xx