Day 71 Hydro and OT appointments

Archive, Arthritis, Health, Hips, Hypermobility, Hip replacement, SURGERY

Yesterday was Wednesday and I had my appointments for both OT (Occupational therapist) then closely followed by Hydrotherapy. It was brilliant to have on the same day, saves traveling and parking two separate days.

My first appointment was OT and I showed her my photo of my swollen knuckles, and explained the pain.

And she gave me some compression gloves to start wearing, whenever I feel like I need them. To gently compress and warm the hand joints.

Totally not attractive, I mean look at them!! But needs must. And I also need to make an appointment with the gp, to discuss steroids or effective pain relief.

So that was done, time for Hydro. And following the weeks walking adventures, I was already tired. But eager to workout as hard as I could too.

  • Walk up down pool forwards x 3
  • Walk up down pool sideways x 3
  • Walk up down pool backwards x 3
  • Hip flexion 20 reps x 2
  • Hip abduction 20 reps x 2
  • Hip extension 20 reps x 2
  • Step ups forward 20 reps x 2
  • Step up sideways 20 reps x 2
  • Push float down core exercise 20 reps x 2
  • Mini squats 20 reps x 2

That was honestly me done, I hobbled out exhausted but accomplished. Once home and dinner done, I promptly fell asleep again. It’s definitely wearing me out proper!!

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Day 20 it’s OT day

Archive, Arthritis, Health, Hips, Hypermobility

In the last few weeks it’s all been hips and I’ve had to take a step back from my hands. Thankfully the recent weeks has been kind to me and they’ve swelled up minimally. But I’m kinda thinking that’s due to taking dihydrocodeine?!

My worse area was the CMC joint and where they put the cannula in. But now it’s all settled down and being reasonable.

After a week it was minimal

And now it’s completely cleared up.

So today is the day to show my lovely occupational therapist how I’ve done my exercises to build up the thumbs, and lengthen the finger ligaments. The physio I’ve done for them has helped, but so did the steroid injection.

Now medication is absolutely minimum, I’m feeling the familiar aches, pains and swellings. So I need advice on how to move forward.

Advice is to make the stretches harder using an elastic band or bobble, like what MiCats told me to do back in July. Now I have better strength and alignment, it should be easier to do.

Ive also got a new splint for my DIP joint of middle finger, as it’s extending all the time. I need to wear this when I’m doing things, like my thumb splints too (see above)

So hideous, but so needed as well. Back in 6 weeks time, to monitor how well they respond. But this is one thing that will get progressively worse over time, with little we can do about it to slow or control it.

#Blogmas 2018 Occupational therapy

Archive, blogmas 2018, Health, Hips, Hypermobility

The day is finally here, I’m not well enough to go, but I’m dragging myself there, as this is needed.

It all started as a disaster on my part, I thought the time was 9.30am but hubby informed me at 9.10am that it was in the calendar for 9.15am OH. MY. GOD. Mad panic ensued, and I had to ring them to tell them. Simple mistake, I desperately hoped they could still see me. Thankfully they were most accommodating.

Roll a pen between thumb and finger, with thumb doing all the work

Make an ‘O’ with hand, and then lift up first finger, feel ligaments stretch down finger and thumb.

Small movements, but I could really feel it. So I’m sure these are going to help a lot.

I’m so glad I went, it was so worth it. They listened, confirmed my hypermobility in each finger joint, showed me tools I can buy to help around the house. Gave me new exercises to try. And even made me some braces, that are bent to my shape, to help support thumbs.

I walked out of there feeling listened too, full of hope for the physio to work in mobility and pain levels. I am optimistic about the future, if I can do the hardwork.

So I’m back in six weeks time, and like any good Physiotherapist, she will be able to tell whether I’ve done them or not.

#Blogmas 2018 4 weeks ish til #HipReplacement

Archive, Arthritis, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

Holey moley how fast is this time going? It’s whizzing by, and now we have university interviews all month, the time is flying by even quicker.

So far we have done one interview and she’s got a conditional offer from them already, but you have to wait to do the others before you accept. So still a few cities to do yet.

It’s also nearly 2 weeks since the steroid and I’m happy to update that the thumb now feels fabulous. It was so worth the discomfort and aches, and side effects to get to this point. I must remember this as now my right big toe is aching (literally I’m fixing/masking one problem area, and another pops up!!) It’s hurting to flex as you step, but hoping rest, ice and ibuprofen will help that.

I literally can’t have other issues, as I’m struggling to juggle on the ones I have. Curse of Arthritis and Ehlers Danlos Syndrome I guess.

As you can gather this week I’ve not done any hip physio, as I’ve not had the energy or time to do them. Each day it’s been a doing day or recovery day. Which is looking to stay like this all of December. Weather too is dreadful so extra pains, swellings, and aches, which isn’t helping at all.

But we did snatch a quick woodland walk in, which I thoroughly enjoyed. Some fresh air, some uneven ground, to help work muscles, so in that way the hip was worked out.

So although it wasn’t regular exercise, I still huffed and puffed, and sweated away. Knowing in a few short weeks I’d be longing for fresh air. Better to get it all in now. However hip was ANGRY as hell once home and rested, took 2 days of complete rest to sort out pain levels to reasonable again.

Roll on the next busy week, it’s Birmingham university next and occupational therapy too.

#Blogmas 2018 Post #SteroidInjection day 4,5,6

Archive, blogmas 2018, Health, Hips, Hypermobility

Not exactly a Christmas story blog post, but this blog chronicles my actual life, so it makes sense to me o include it.

Following on from 6 days ago, I received an intra articular steroid injection in the right hand, the CMC joint to be precise.

Each day I’ve seen and felt an improvement in the functionality and pain levels, and in swelling too.

Day 4

I’m still doing my daily exercises with the bobble as a resistance band. I’m also not protecting it from normal daily chores. It’s ok, it’s not entirely painfree. Started to notice the DIP joint is tender, and stings at times.

The DIP joint is the top knuckle of the thumb (or fingers) this is a new pain? Also I’ve felt ridiculously tearful, literally over nothing!! But I know it’s a side effect so I’m not reading anything into it.

Headaches are pretty frequent as well, but again I know they are a common side effect, so I have to just ride it for a while. And hope it settles down.

Day 5

I’m noticing it’s not as painfree as the other hand was immediately, so that’s a bit frustrating. But at least it’s after the days exercise and only aches at night time after a full day of use. Maybe it’s slower to heal as it’s my dominant hand.

Some evenings I’m putting the brace on, to support it and rest it when I know I’m physically resting more. It’s mainly to stop the joints from flexing too much.

Both hands went sore and swollen at the MCP joints and CMC joints because I went for a woodland walk, only outside for 1hr 30mins with plenty of stops and rest. Not sure why they flared up? Thankfully they went down after 30mins.

Day 6

Wow nearly a week has passed, and though it has niggles it’s 90% better than before the injection. So for that it’s totally worth the added pains, swellings and mood swings. I just pray it will last a while, as really all that’s left to manage it, is bone removal, joint replacement (I’m going to end up as mostly machine)

In this the trapezium bone is removed and the fingers ligament is used to fill the space instead.

Here we have surface replacement, bit like a total hip replacement, creates new smoother surfaces that don’t rub together, unlike bones.

Next week I see the OT and I’m keen to see what they say, I honestly can’t face more surgeries, but then this pain can be so disabling as well. Torn by decisions.

Steroid injection day

Archive, Arthritis, Health, Hips, Hypermobility

Well the day is finally here, after the disappointing Friday. Where I had an appointment but sadly no ultrasound machine to carry out the said procedure.

So, what am I having done, it’s an intra- articular injection which simply means injection directly into the inflamed joint.

The injection itself is usually quick and easy for them to perform, I say quick but to me it feels ages!! And when guided by an ultrasound machine, they can easily guide the needle directly to the inflamed area.

This time however I had the injection site through the thumb pad, not like the picture above, but like the photo below. Thicker tougher skin, I definitely felt it more this time, and the wiggling needle, seriously ouchie. And let’s not forget the joint feeling like it’s about to burst when the steroid kenalog is filling the joint space.

I came prepared with a mango coke, as last time I felt dizzy, sick and almost fainted. And this time was no different. Instantly sick feeling as needle comes out, woozy and dizzy, the sugary drink helped level me out. You have to sit around afterwards to ensure you don’t have an allergic reaction. But once my head cleared and I felt normal again, we left to go home and rest.

As you have a local anaesthetic as well the area is numbed a bit to help ease the pain of the steroid, but I will admit you still feel it a fair bit. And certainly after it wears off about an hour or two, the area will be achy and sore for a good 24-36 hours afterwards.

So no exercise or strenuous exercise on the joint while it’s sore and stiff. You may even need to brace it, juts to protect the area for a few days. Certainly what I did last time. As it’s my dominant hand, I feel it’s going to be harder to rest.

7 weeks until #hipreplacement

Archive, Health, Hips, Hypermobility, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

Feels like I’m going back in time!! Well now I have more time to play with, maybe it’s time to sort these hands a bit more long term?

So with that in mind I went to see the GP. As I’m at my wit’s end with pain.

Some days they are like lightening and I struggle to even hold my phone and scroll. Other days it’s like there’s never been an issue.

I have not found a reason of the fluctuations in mobility and pain levels. I eat the same way every week (the success of our weight loss and maintaining weight) and I do the same level of physio exercises. So it can’t be any of those.

Really I’d love a magic wand to take the pain away, but that’s not possible. Though 5% ibuprofen gel takes some of it away, but I can only use it 4 times a day.

No real answers to it all, except I am trying to book in with MiCats for another steroid injection, which admittedly the last one was July and has worked very well. Also seeing OT (occupational therapy) on 5th Dec to see if there is anything they can do to help.

Thankfully I managed to snag a cancellation appointment for Friday 23rd Nov instead of waiting until 31st Dec. But the steroid injection couldn’t be done on the Friday due to no ultrasound machine, so back on Tuesday 27th for a CMC joint kenalog injection.

We had a long chat, she gave me exercises to try, I grossed her out with how much range my thumb has, clearly it’s not a normal range. But we touched on the fact she doesn’t see steroid injections long term. Something I know my hip consultant says too, however rheumatologist and gp say different.

Hip wise, I’m back to doing the post hip replacement exercises, and I’d actually forgotten how hardcore they are, still no improvement on standing freely on one leg, it’s not happening. Or extending leg outstretched forwards, the leg is too heavy and too resistant.

Still shocks me how hard these actually are too do.
I can only hope they aim to improve the tone and muscle and my stamina, all for better smoother healing afterwards. And at least they are keeping me busy in the meantime too. Instead of wallowing in self pity.

I’ve rung to confirm the new official surgery date, so as of today it’s officially 9th Jan 2019 as long as nothing else happens. No date for pre op as of yet though.

Making Decisions…. 45 weeks post #hiparthroscopy

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

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At the start of the weekend I found myself asking this…..

Question – So how do you ever decide to do it or not? My history is I’ve had 2 triple pelvic osteotomies, 2 femoral osteotomies, 4 steroid injections, and now 1 Arthroscopy op which removed All my labrum and shaved the femoral head. I have grade 4 osteoarthritis in the acetabular and grade 3 in femoral head. And although I walk aided with a walking stick, I’m now still better than I’ve ever been in 10yrs. But I struggle with gait, still get pain when tired or walked too much. Since my latest steroid 27th June it’s been lovely, so now I’m doubting the decision to move towards a replacement, as surgeon McBryde has discussed it may not rid me of pain 100 percent, or rid me of my stick either. I’m so confused and frustrated.

Such a difficult decision to make, and the state of the NHS worries me. What if I delay and in a year or two it’s no longer an option? And of course it’s taking myself out of action again, recovery again and taking risks surgery wise.

So hard to make this decision. And one I’m not taking lightly either.

And now after a busy weekend, my mind is almost made up….

I’ve swung from delaying it to absolutely doing it once again!! And what has changed my mind? You ask. Well pain has, I think it’s the end of the steroid relief, it’s been 4.5 weeks since I had it done, and the white hot burning groin pain has started to creep back into my life. At first I thought I was just tired, or overdid it (ie went upstairs for the loo too many times) but no… As I sit here after all night resting it’s as angry as hell, and it makes me feel so angry, frustrated and murderous.

But I also question, is this flare up of pain due to the change in weather??

I have until 21st August and I’m keeping a note of pain levels and weather, to show the surgeon and get his opinion on this. But as it stands here and now, I say it’s gotta go, I’m over hips ruling my every waking/sleeping moment, my pain invades my happiness and clarity to think straight. I just want to live life and have adventures.

Bad back and hippie woes!

Archive, Family Adventures, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Travel, Triple Pelvic Ost, Femoral Ost, PAO

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This week I launched my Tragically hip tees on https://www.bonfire.com/to-all-those-tragically-hip/ and you too can own one, raise awareness for all us hippies, click Here

It has 10 days until campagin ends and then they ship out 15th August. So that was my Monday, feeling marginally better back wise, ice really being my friend for pain relief.

Tuesday I managed to go down to one crutch, feeling a lot less broken and I’ve started to actually move a bit more, I’m scared of it becoming too stiff.

Wednesday I did some gentle stretches, I found ones for back pain, I did the minimum as it was all about movement, not actually exercise.

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Simple and gentle was all I was after, and now I’m finally back onto my walking stick, huge improvement since Sunday. Last of the nice days tomorrow so we decided on an impromptu beach visit. I obviously felt better in my head.

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Thursday we popped to Barmouth, a journey I don’t usually mind, though this time it certainly was harder and more painful indeed. But sun was glorious, water was heavenly and to swim was a good giggle. Only time my back didn’t hurt was in the sea!! My head wanted to do loads, but in truth just a quick swim and stroll to the ice cream shop did me in. Had to keep sitting down, not that the seats are comfy.

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I practically slept all the way home, the day really took it out of me, way more than I imagined too. But I’m glad we did it, a sunny day at the beach is always worth it.

Phew then Friday it was my birthday, a lunar eclipse, blood moon and mercury in retrograde. I was bodily broken, still feeling the effects from the beach visit. But we’ve had a gentle day, with my parents, then a movie #spidermanhomecoming as I’m a Spidey fan. And pink gin, what could be better??

Sadly too cloudy for us, Thor God of thunder came to visit so we had no view of this spectacular celestial event, once in a century event. Gutted.

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42 weeks post #HipArthroscopy

Archive, Health, Hips, Hypermobility, Hip Arthroscopy, SURGERY, Triple Pelvic Ost, Femoral Ost, PAO

 

Best Fitness Motivation Memes best 20 don t give up ideas on pinterest dreams e

Well if I was pregnant I have now done a full term and then some… But I’m not. However I do feel more in a position to judge the arthroscopy surgery and it’s results so far.

Am I pain free? Quick easy answer is NO. but I’m coming to terms with its unlikely to be that painfree ever.

Am I more mobile? This is more difficult to answer, Yes I am doing more, but mainly because my mind isn’t as broken as before. And the realization that this may be as good as it gets forever, spurs me to make the most of it regardless.

Before my mind was truly broken, I didn’t trust my ability and stamina, I definitely didn’t trust the legs.

This past 9 months has been going to basics, working the muscles from absolutely nothing into legs I do trust to hold me up, they are stronger, I am fitter. (Sadly not lighter though)

It’s been 2 weeks since the steroid injection and it’s been ok, but it’s not been the magic pain free injection I hoped for. But I did have some improvement, so I can’t complain really.

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This week it’s been about getting into an exercise routine once more, though I needed Monday off completely to recover from our barmouth weekend.

Tuesday I did the basic post hip replacement physio exercises

Glute squeeze 20reps x 2

Quad activation 20reps x 2

Heel Slide 20reps x 2

Hip abduction (lying down) 20reps x 2

Short Arc Quad 20reps x 2

External hip Rotation 20reps x 2

Bridging 20reps x 2

Pull in stomach breathing 20reps x 2

Hip flexion (ankle weights) 20reps x 2

Hip abduction (ankle weights) 20reps x2

Hip adduction (ankle weights) 20reps x 2

Hip extension forwards (ankle weights) 20reps x 2

Hip extension backwards (ankle weights) 20reps x 2

Heel to buttock (ankle weights) 20reps x 2

Mini squat (ankle weights) 20reps x 2

Hip pendulum (on step ankle weights) 20reps x 2

Looks like a lot, but broken down in an overall day of physio. It’s done slowly and methodically, with resting at times. All its for is muscle activation and strengthening.

Wednesday to rest the lower limbs it was a weights day. I’ve read that if you have Arthritis you should try and lift between 5% to 10% of your body weight, so you don’t lift too heavy and speed the disease up. I use 7kg for my arms now, but I started slowly and light at 2kg at first. I don’t do much as hands and elbows are in a joint flare up today.

Bicep curl 10reps x 2

Shoulder press 10reps x 2

Lateral raise 10reps x 2

Bicep row 10reps x 2

Tricep kickback 10reps x 2

Chest press 10reps x 2

Tricep overhead 10reps x 2

Kettle bell swing 10reps x 2

Again it looks more than it is in reality, and the sets are broken up between morning and afternoon. It’s to lubricate and activate, more than anything.

Thursday I can feel a change in the air, my joints ache, mainly my fingers and elbows. Although hip is niggly too. Opt for a day of mostly rest, painkillers and hot water bottles. I discovered I can’t even lunge my left foot behind me due to ankle issues ( I rolled it in may 2017 and it’s still not right now. Perhaps I should see someone) I did try some compound exercise for physio though, only 5 exercises but they killed me off.

Goblet Squat 10reps x 2

Three point row 10reps x 2

One dumbbell reverse lunge 10reps x 2 (actually can’t officially lunge, it’s more of a step back, and letting leading leg take weight, super easy for most folks but for me it’s painful and very difficult)

Single arm chest press 10reps x 2

Supine marching 10reps x 2 (this really pulled operated legs glutes into action, but also hurt my groin. Don’t think hip is ready for this? It’s meant to work your core, but I felt it all in the hip??)

Friday I honestly feel bodily broken so it’s probably a curl up on the sofa, hot water bottle and Netflix kind of day. Frustrating as brain says go, body says NO. But I’m pleased I managed 3 days of various physiotherapy exercises, so if I don’t do anything today that’s still self care and productive in my healing.

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