Just so fed up.

[thevelvetcurtain]

At the beginning of June I badly broke my knee. Already having ME and an array of mobility issues, this knocked me worse than it would for most.

I've been in the house for two months apart from hospital appointments, which involved being picked up by hospital transport - and they were awful, awful to me. I need help to get from the bed to the sofa. My knee needs propped up at all times. I'm on heavy painkillers every four hours. My sleep has went to shit. My partner had to help me onto the toilet for the first month or so and now needs to wait with the door open in case I fall. I can't even get into my garden because there's a step down into it and then the garden itself is basically a big hill. I can only just safely go from lying down to sitting up without anyone else helping.

My work involves working from home generally with then week-long blocks of time in a venue (I'm a producer). However I can't get to the venues so I've missed out on a lot of work, because people want to be able to hire someone who can get to the places and actually deliver the event - fair enough especially with all the added risk assessments needed due to covid. But it means financially we are drained, and really hobbling along.

My partner is picking up a heavy load and I just feel so sad because I'm not contributing anything. We have animals and I can't even walk our dogs or sort their food. Physiotherapy haven't been in touch yet despite me trying to sort that. I'm just so fed up, sad, and falling into a depressive episode because god my life is a waste right now. I had such a busy and full life with lots of independence and now I spent my days drugged up and useless. I really valued my independence so it's really humiliating having to be helped with everything.

I know there's nothing anyone can do, I just needed to put this somewhere. My partner is dealing with enough without taking on this stuff too. I'm just fed up.

Sorry you're going through this.

If this has been going on for months, check if you're entitled to PIP. Put in a claim if you're not sure. It's not means tested so your DP earnings won't matter. If you're eligible, it's backdated to the date you put in your claim. Check if you're eligible for Universal Credit too, since you can't work (although I think it's based on you being unable to do any job, not just your usual job), you never know though.

Look into Borrow My Doggie website for help with the pets.

Contact your GP about the depression, nip it in the bud, you've got enough problems without adding that in

okay so what are the recommendations with the knee. what position is it in (cast/brace etc.)
i broke both ankles (can't remember when say 2 years ago)!
toilet wise, can the bathroom fit toilet safety rails?
next do you have a wheeled walker available?
pain medication what are you taking?
you can sort this out.

@AmberIsACertainty

Sorry you're going through this.

If this has been going on for months, check if you're entitled to PIP. Put in a claim if you're not sure. It's not means tested so your DP earnings won't matter. If you're eligible, it's backdated to the date you put in your claim. Check if you're eligible for Universal Credit too, since you can't work (although I think it's based on you being unable to do any job, not just your usual job), you never know though.

Look into Borrow My Doggie website for help with the pets.

Contact your GP about the depression, nip it in the bud, you've got enough problems without adding that in

Thanks for the well wishes, I really appreciate it.

I'm going to look into PIP further - it's on the to-do list anyway due to general mobility stuff. Good to hear you can get it backdated! I'm on UC at the moment and signed off-sick due to the knee, so there's some relief coming in, and we have some savings but they're sinking quickly.

We do have an excellent dog-walker who takes one of our girls out three times a week, however our other dog is a very scared rescue and needs a lot of work, and won't go out on walks just yet.

I'm on mirtazapine and have been for months but they're refusing to up my dose because this is 'situational depression' apparently. I'm on 50mg which isn't even that high to begin with, so I'm quite annoyed about this, but I couldn't convince them otherwise and I don't know how to make them understand

@fallfallfall

okay so what are the recommendations with the knee. what position is it in (cast/brace etc.) i broke both ankles (can't remember when say 2 years ago)! toilet wise, can the bathroom fit toilet safety rails? next do you have a wheeled walker available? pain medication what are you taking? you can sort this out.

It's in a brace at the moment. I don't know about recommendations, we were told physio would be arranged and it still hasn't despite me calling them. They've been very blase and told me to continue with the exercises and that they'll see me soon... so that's what I've done, but as you can imagine it is very stressful not knowing when extra support is coming.

We rent but our landlord is lovely, so toilet safety rails are definitely something we can see about.

I use a zimmer right now (which makes me feel much older than I am, I'm only 22 ). I can technically walk to the living room with no help now however we use dog gates in the living room and these are all the more needed as we don't want the dogs knocking into me. I can't open the dog gate alone because it requires standing on my feet without support, so DP needs to at least be in the room to help with that.

Ideally I want to be able to get around by myself, sit on the toilet alone, be in the kitchen and make my food without assistance (we don't have a table in there but we're going to try and get one), and generally manage to be more independent.

I'd also ideally like for this to never happen but it's a bit late to wish that now!

I'm taking paracetamol every 4hrs. I was on a high codeine but I'm being taken off that. I also take ibuprofen when needed.

You really need to get the physiotherapists involved. Waiting since June is way too long. Can you phone your local home care and get that going? They will help you with transfers etc and get you moving.

Generally speaking a fracture takes six weeks. You should be able to increase your mobility soon. Talk to your doctors as well.

Best of luck OP.

I cried when dh presented me with a wheeled walker :(.
But it allowed me so much more independence. Partially because of the seat. Do you have areas of the home where this would be useful?
Next, you need to focus on what is working pain free. Work your arms, the other leg, core muscles. Push yourself gently daily.
You tube is your friend.
When is the brace off? Can you shower? Practice moving it gently, check out Tai Flow on YouTube for once your ready.
Use ice liberally and stretch out the pain killers.
Do the dishes, dusting, laundry all those mundane tasks are things your comfortable with and can modify as needed.
Push yourself, the increased circulation will help your mind and body.

@LoveFall

You really need to get the physiotherapists involved. Waiting since June is way too long. Can you phone your local home care and get that going? They will help you with transfers etc and get you moving.

Generally speaking a fracture takes six weeks. You should be able to increase your mobility soon. Talk to your doctors as well.

Best of luck OP.

I've been calling the physio daily and leaving voicemails and nobody has gotten back to me I didn't know I could contact my local home care, I have no idea how to do that but I'll look into it, thank you.

@fallfallfall

I cried when dh presented me with a wheeled walker :(. But it allowed me so much more independence. Partially because of the seat. Do you have areas of the home where this would be useful? Next, you need to focus on what is working pain free. Work your arms, the other leg, core muscles. Push yourself gently daily. You tube is your friend. When is the brace off? Can you shower? Practice moving it gently, check out Tai Flow on YouTube for once your ready. Use ice liberally and stretch out the pain killers. Do the dishes, dusting, laundry all those mundane tasks are things your comfortable with and can modify as needed. Push yourself, the increased circulation will help your mind and body.

Ohhh sorry I thought by wheeled walker you meant a zimmer! Do you mean one with a seat? I don't have one of them but I'll look into them for sure, that sounds really helpful.

I'm trying to move my body regularly in other ways, I'm lifting (light!) weights daily just to keep my body moving. I can't imagine sitting still all the time and it brings some relief!

I'm not sure when the brace is off. The aftercare and information from the hospital has not been good. I can't really shower, our shower is tiny. It's been a struggle.

Thanks for the recommendation of tai flow, I'll check that out. Maybe there's some I can do even with the leg like this. I need to keep moving.

Oh poor you. That sounds so rough. I hurt my knee at Christmas but nowhere near as badly as you have and it meant i was quite immobile for a month. It was one of the hardest times of my life as I couldn't go out and see anyone, spent all day in bed and was so lonely and low.

It really made me appreciate my mobility when it returned.

Huge hugs. How did you break your knee?

Just wanted to say hugs op, I had knee surgery and it was by far the worst recovery, much worse than lung surgery! I was so irritated by not being able to move at ease, I was quite young at the time and it was such a shock, I hadn't realised how much I needed to move for my wellbeing.

Definitely chase and chase the physio and do the exercises religiously, they are sooo tedious and repetitive but you will make a speedier recovery.

I had a brace and it was on for 6 weeks I think then it was up, down, around with physio, then moved onto propreception and I had a wobble board.

I should add mine was a cartilage tear.

I'd also pay for private physio rather Than waiting for the nhs if you can. There are lots about. I would go for a recommendation on word of mouth if you can as I did try a few dud ones. But good physio is crucial in recovering from injuries and you shouldn't delay it.

My mum had private physio, using a service based in her GP surgery as obviously NHS physio is very limited (she broke her shoulder). It was £40 an appointment and the physio was absolutely fantastic. Worth investing in, if you can find something like that.

I'm going to look into PIP further - it's on the to-do list anyway due to general mobility stuff. Good to hear you can get it backdated!

You can't get it backdated to before you claimed. It's that it can take months for a decision to come through, so if successful (or if you appeal and the appeal is successful) it gets backdated to the date you first made the claim.

That sucks about the ADs. Can't really understand the GPs thinking there. Yes of course it's situational depression, but you can't change the situation and if it's likely to go on for a long time, well depression is depression regardless of the cause. But if they won't increase it, ask their advice on what else you can do to combat the depression and do it, then if in a month's time it isn't working you can ask again about upping the ADs. If you want to look for a silver lining, it's that you might learn new ways of coping that don't involve meds, lessening your reliance on them which is ultimately better for your body than needing so many meds you rattle when you walk. Maybe all these ideas from other posters will help you feel more in control of life and as though you're doing something instead of endlessly waiting, that might help the depression too. Life with disabilities is hard, so I understand where you're coming from. If you're not sleeping at night look into over the counter remedies for that. Regardless of whether it's pain, anxiety or depression that causes it, lack of sleep makes everything seem ten times worse.

@garlictwist

Oh poor you. That sounds so rough. I hurt my knee at Christmas but nowhere near as badly as you have and it meant i was quite immobile for a month. It was one of the hardest times of my life as I couldn't go out and see anyone, spent all day in bed and was so lonely and low.

It really made me appreciate my mobility when it returned.

Huge hugs. How did you break your knee?

So sorry to hear that you hurt yourself too. Totally relate to how it made you feel!

I rolled down a sand dune/hill on the beach and into the river that was running into the sea. It was pretty bloody traumatic actually!

@MistySkiesAfterRain

Just wanted to say hugs op, I had knee surgery and it was by far the worst recovery, much worse than lung surgery! I was so irritated by not being able to move at ease, I was quite young at the time and it was such a shock, I hadn't realised how much I needed to move for my wellbeing.

Definitely chase and chase the physio and do the exercises religiously, they are sooo tedious and repetitive but you will make a speedier recovery.

I had a brace and it was on for 6 weeks I think then it was up, down, around with physio, then moved onto propreception and I had a wobble board.

Thanks for the well wishes.

Oh god yes the exercises are tedious aren't they! They are helping me move so that's what matters.

How long did it take for you to be able to do something as simple as go to the hairdressers or see a friend without any support? Until you were able to walk without thinking about it?

@garlictwist

I'd also pay for private physio rather Than waiting for the nhs if you can. There are lots about. I would go for a recommendation on word of mouth if you can as I did try a few dud ones. But good physio is crucial in recovering from injuries and you shouldn't delay it.

I so wish we could but we are skint now Going to keep chasing physio though.

@AmberIsACertainty

I'm going to look into PIP further - it's on the to-do list anyway due to general mobility stuff. Good to hear you can get it backdated!

You can't get it backdated to before you claimed. It's that it can take months for a decision to come through, so if successful (or if you appeal and the appeal is successful) it gets backdated to the date you first made the claim.

That sucks about the ADs. Can't really understand the GPs thinking there. Yes of course it's situational depression, but you can't change the situation and if it's likely to go on for a long time, well depression is depression regardless of the cause. But if they won't increase it, ask their advice on what else you can do to combat the depression and do it, then if in a month's time it isn't working you can ask again about upping the ADs. If you want to look for a silver lining, it's that you might learn new ways of coping that don't involve meds, lessening your reliance on them which is ultimately better for your body than needing so many meds you rattle when you walk. Maybe all these ideas from other posters will help you feel more in control of life and as though you're doing something instead of endlessly waiting, that might help the depression too. Life with disabilities is hard, so I understand where you're coming from. If you're not sleeping at night look into over the counter remedies for that. Regardless of whether it's pain, anxiety or depression that causes it, lack of sleep makes everything seem ten times worse.

Ah okay I understand now, thank you.

I don't understand it either! I think I'm going to try and ask again soon. Therapy is expensive and the waiting lists are long so whilst I'm on them, I'm not sure of what else I can access in here and now. Good point on being able to build new ways of coping though. Thanks so much.

I can relate OP. Its rough. Being stuck in the house is horrible. Do you have friends? If so you need to make it clear you need some scheduled visits. You need a laugh basically. Arrange some nights in over the next few weeks where you get dressed as if you're going out. Does your partner drive? Ask him or a family member or friend to take you on some day trips.

It's more from the perspective of playing the game, even if you think nothing will help you or there's nothing out there to access #1 you could be wrong and #2 if you've followed GPs advice it puts you in a stronger position to return and say I've tried but nothing has changed.

Living Life To The Full website is free CBT, I've heard of Headspace app too, if libraries are open in your area ask DP to get you some self-help books. If you've not already tried them there's the "Overcoming" series of books including one for Depression and one for Chronic Fatigue (ME) which might give you some additional coping strategies for improved life even if it doesn't bring about a complete recovery. If you can find 100 small ways to improve life, that adds up to a big effect on overall quality of life. You posted saying you were venting because "I know there's nothing anyone can do" and it's turned out not to be true because you've got lots of encouragement and advice and ideas to try. Some of it might not be suitable, some might not work, but hopefully some of it has already made you feel a bit better and hopefully your life will have further improvements in the future.

Have you heard the serenity prayer? Give me the courage to change the things I can't accept, the serenity to accept the things I can't change and the wisdom to know the difference. Look for the things you can change and set about doing it, look for ways to be calm about the things you can't change. Essentially, don't wait passively for things to happen to you, be an active participant in your own life. "Making the best of it" is a mindset one has to choose. Asking for help, which you've done here, is a good place to start. You do sound like a pro-active person in general. Hopefully this phase of life is just a blip.

Ah wrote long post now its gone. I could weight bear once the brace came off and I used crutches on and off for about 3 months. The physio will be able to tell you what to expect and when, hope you see them soon.

Doing some mindfulness would probably be a great help, it wasn't a 'thing' when I my knee operation, but after a different operation I did the 8 week NHS Mindfulness Based Stress Reduction Course (MBSR), it was really great and helped keep me sane.

Nowt wrong with a rant and a moan though!

You also might consider complaining to PALS if its much longer. After my op I had a dreadful physio who told me I could walk around as normal and bend it 45 degrees, so I went back to work. I was standing in the office and he called me and said don't stand for long and you can't bend it more than a fraction! He was also really negative during my appt. I was cross as I'd had an Occ Health assessment (in a basement in an impossible to get to clinic behind a school) based on what he said.

They gave me a new physio who was super positive and awesome.

Be kind to yourself, your body is healing. I don't know if it helped but I also took supplements for healthy joints.