And it’s my Birthday!!
Been a bit of a lazy ole week since last week’s post. I’ve had too. Mainly due to recovering from camping and the leg cramps I’ve had took some time to ease off too. The cramps themselves have really hindered things, as they not only hurt for the few minutes while it’s contracted, but they were also tender and weak for the next 24-48 hours afterwards too. I must ask Micats if I should be worried about them when I see her next week.
We’ve also assisted our eldest in some of the house move journeys, and a dose of babysitting too. Which is like a workout I tell you, kids run you ragged. My body can barely keep up.
Quad Stretch 30 sec hold each day, both sides.
The tightness is unreal, perhaps this has been my main problem overall the whole time. I find I can’t do it standing up as most can. So lying down on my side helps.
Child pose, I enjoy this quad and back stretch, 30 sec hold each day.
Counting down the days until I get my steroid injections into my thumbs, looking forward to it while dreading it at the same time. Bloody hurts, but hoping it will take me up to Christmas time, and hopefully surgery time then. Not long now to wait only a week from now.
Rang the ROH for some guidance on when appointments will be and it seems for my 1year appointment and post steroid injection check up will be mid Sept so quite late really. And for the Hand Surgeon I’m already overdue in appointment but the waiting list to be seen is quite long too, but at least I’m on the list. Shame as I was hoping for a winter surgery, that may not be possible.
hypermobility
Those new exercises I was given last week, are actually a killer, no matter how basic they look. Looks are deceiving that’s for sure!!
The aim was to do 10 reps of each exercise and do 2 to 3 sets of them, alternate days. Well I’ve only been doing 10 reps for 1 set on alternate days. It’s too much to add another set for now. But maybe if I keep at it consistently, then it will build up enough to manage a second set.
Most of the exercises feel reasonable kind of aches. And I am grateful for doing them alternative days, rather than daily. But the knee to chest stretch is so so difficult, and it really flares up the psoas. Trying to trust the process that it will get easier over time.
I have now filled this blogs entire media allowance, so I either have to delete old posts, or photos. (Which I don’t want to do as they chronicle my entire hip dysplasia journey.) Or start a new free blog, so I have. You can find me at http://HipsterDebbie2.wordpress.com
So please go and follow that new blog, as this one will be shelved. And I don’t want to lose my wonderful friends I’ve made here. Hope to see you there, if not then thank you for being here and reading so far. Thank you for everything!!
We’ve all struggled over the anxiety and stress of covid the last 2years, having restrictions, rules and lockdowns. And now as they was easing, and hope was returning, we are now plunged into another crisis with the prospect of full on war between Russia and the world due to their invasion of Ukraine.
And while I don’t want to dismiss it, I don’t have any desire to focus on it either, in order to protect my own mental health. So it’s good to step away from the news, and from social media, and breathe in nature, nice and deeply.
This week is a particularly tough week emotionally with grief ever present, and physically as I’ve had some of the worst pain and flares to deal with, barely sleeping due to pain in my hands. It’s hard to look after yourself when you feel so low and exhausted, and I’m sure pain feels worse when you are emotional, and fatigued.
So be gentle with yourselves and step back from things that stress you out, of you feel anxiety creeping, take time to listen to podcasts of guided meditations, or asmr videos if they relax you. Run a bubble bath and have a pamper session with a sheet mask. I’ve been watching some guilty pleasure TV A Discovery of Witches, a way to escape into something whimsical. Sometimes even an afternoon murder mystery film and a coffee with biscuits is all I need to help re-centre myself and allow the mind to be more present.
This last week has been a massive struggle. Flaring up psoas pains all the time, along with hands I’d gladly amputate most days. I’ve not been sleeping well either.
As the psoas has flared up again, I have opted for more passive gentle stretches and movements.
I am finding this knee to chest incredibly difficult, and it hurts too. So slow and steady and nursed with ibuprofen gel and hot water bottles
We’ve not been out for a walk for 2 weeks and I can certainly tell, as it does help us mentally. So I hope we can change that this week, now the weather has improved a bit.
This walk mentioned here was done a week or so ago. Been resting ever since.
Sometimes things don’t go to plan, and you just never know how or when. We had an epic new place to have a walk around, the weather was good, and I was excited.
But as I was preparing my coat and bag in the car, I hurt my hand merely twisting the wrist, and I burst into tears. My god this hand it getting hard to live with. This hand was already in a compression glove and splint to protect it, yet I still managed to hurt it.
Getting myself together and forcing the tears away, we set off. Pretty lovely amble at first, until I sank in some mud, thank heavens for boots!
We managed to get to the main destination, but it came with a cost of the hip swelling up quite a lot. Clearly it didn’t like this retrain and the challenges I was putting it through. I took more pain relief and grateful I could sit down and properly rest it.
After getting to our main part, it was all downhill and through countless more fields, but we stumbled upon a new situation, one that we always have at the back of our minds, Stiles. If you’re lucky you get gates, or tiny passing places, or a well built stile. However I reached one that made me cry, I was terrified of it, it felt too high, too hard, and too unsteady. I was convinced I was going to fall, and we had to shove the leg over. And it meant one hip needed to internally rotate, so I could get a toe hold while bringing other leg over. Now if you have a hip replacement you may know this is a huge No No. I had to trust my 3yr old hip replacement to do this, and it felt boggy, thankfully I got over but the whole experience tipped me over the emotional edge.
Knowing we could have many many Stiles, and me already in a state with a swollen hip and emotional nervous wreck, we stopped to have coffee and eat more sandwiches while Mr Moon reassessed the route and changed it for a road instead. We ended the walk much earlier than planned, but I was grateful. It was definitely the right call.
I’ve been stuck in a flare for about a week now, the hands are being ridiculous, and my back is horrendous!!
But today is time to see my physiotherapist at the hospital, the one that actually listens to me, so worth their weight in gold. I’ll be telling him what the surgeon said and the other physio, to see what we can come up with moving forward. Also I’m hoping he can help refer me to occupational therapy, or rheumatology.
Had my legs measured again,top pelvis bone to ankle bone, and this physiotherapist got 91cm and 92cm so only 1cm difference. Wildly different to the local physiotherapist. Well I’m listening to the Surgeon and hoping more intense physio is the key.
The LLD (Leg Length Difference) is causing back pains, so I’ve been given some Knee Rocks to do to stretch and relax it out.
And once I feel able and strong enough I can try hip hitching using my step. Making sure the pelvis doesn’t tilt or lean, as that defeats the purpose, so only tackled once you have strength to do so.
I had zero help from the GP, who barked at me for asking for a rheumatologist referral. I only said that micats recommend that I ask for a referral for rheumatology and have bloods checked, as it’s been years. Well he was offended I asked, demanded to know why micats hadn’t done it, and quite honestly angered me beyond belief. Here I am, just struggling to get my hands to work, and sleep due to pain.
So all I got out of him was maybe an occupational therapist referral, but goodness knows how long that will take, but it’s better than nothing. Perhaps they can refer to a rheumatologist, though I’ve emailed micats to help me too.
I’ve been trying to do some exercises especially for the hands, like tendon glides to see if this will help ease some of this flare. My micats lady is unavailable for advice until 14th February and this level of pain is just soul destroying.
I would love new splints, but I want to see occupational therapy first to see if they can advise me on them, and maybe help me get a day one and a stiffer one for nighttime. To see if more active rest will help.
As least this type of phsyio I can do sitting watching TV, or reading a book. I do wear my compression gloves while doing them, just to help support the thumb a bit.
I hate moaning, and in winter it’s definitely what I seem to do more, as the whole body fails me. Sometimes it just sucks to have pain 24/7 and no relief. I so wanted some help from a GP and I’ve never felt so medically abandoned in my life!!
Not really sure what I’m hoping for, but at least I hope I will have new xrays to see how far it’s advanced from last year’s x-rays.
Unfortunately this appointment was a DISASTER!! First they lost my notes. 30 mins extra wait, No x-rays given. And when discussing the hand he again said he can’t offer any surgery for 5-10 years until my lax joints are no longer lax.
So I’ve come out feeling lost, frustrated and annoyed. The pain can be horrendous, I can no longer do any crafts I used too, and even writing is hard as the bones knock. I asked about a splint, but he said just buy more.
So I’m definitely going to find a second opinion, as I know different surgeons offer different styles of surgery. Unfortunately this one only does a trapeziectomy, and his feeling is my soft tissues will not hold the thumb in place. But perhaps another can offer to fuse the thumb, so it’s not relying on soft tissue? Worth an ask.
Let’s hope a second opinion won’t take too long to get.
So I’m 22 Weeks Post Op, and I haven’t had a physical physio appointment since way way back at the beginning of October, so that makes it a whopping 13 weeks since I’ve been seen!!
Wouldn’t usually be a problem, except I’ve been having huge issues with pain and weakness, which in turn has hindered all healing and progress.
As time goes on I’m convinced it’s the illopsoas, causing a bursitis, I had thought it was more muscle based, but I tried the specific stretches for them with no luck at all. And reading up on it, it seems post hip replacement it can be caused by the acetabular cup. So it’s certainly something I want to ask my consultant the following week.
After speaking to my Physiotherapist he confirmed he thinks the same, either from doing more, or perhaps the acetabular cup rubbing, or merely the new position the leg is in.
So we’ve found 2 stretches that are basic enough to not hurt too much, but isometric enough to target and hopefully build it up, if it’s a deconditioning issue.
And with this one slightly harder for me, is the chair one
Biggest change is the encouragement to take more painkillers and not as I feel pain, but before to try and fend it off. So that is certainly what I will try for now and let’s see what the Surgeon says next week.
Health sucks, and none more so than having EDS as it’s making most of my body fail, most know about my hips, and now hands. But teeth is a huge issue too.
I’ve recently been having weekly dentist appointments, all working towards some partial dentures.
Having such a weak jaw and weak teeth due to Ehlers Danlos Syndrome, the only way to achieve a decent jawlife and to save remaining teeth is to have dentures.
But I’m struggling, they feel too bulky and I often gag. Haven’t eaten anything successfully in them yet, but just about managed a drink or two. I’ve managed to wear them for about 6 hours, before I just have to get them out. But I guess keep doing it daily and build up on time, as the first time 8 could barely manage an hour.
But I am going to try and stick with it, even though they make me want to cry, scream in frustration and just give up.
debbiehipster 