21 weeks post #hipreplacement

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

After all the excitement of orbital on Friday 31st may, I’ve done little in moving, due to massive increase of pains. So much so I’d had to take tramadol on that Friday.

So the whole weekend was catching up with #Terminator 1 and 2 movies, and various TV shows too. It was a tad boring, but very very necessary to allow pains to subside.

This week has seen me go back to basics, more to train the mind to muscle memory, so no weights, no resistance. Just purely focusing the mind on the muscle and contracting it, ensuring they are engaging properly, and not having other muscles (stronger ones from taking over the job) I find my quads do this over my glutes.

  • Glute squeezes 20reps
  • Quad (pull knee caps up) 20reps
  • Heel Slide 20reps
  • Short Arc quad 20reps
  • Hip abduction 20reps
  • Clam side drop downs 20reps
  • Clam side raise 20reps (finally I’m ok ish lying on operated side)
  • Hip bridge (really squeezing glutes, so quads don’t take over) 20reps
  • Dead bugs 20reps
  • Long arc quad 20reps
  • Ball squeezes between ankles 20reps
  • Ball squeezes between knees 20reps

Felt good to get thing moving and lubricated. I’m seeing improvements on the operated leg, though the weakness the opposite hip has is apparent!! So is that bone or muscle? Not sure, there’s no pain just utter weakness and limitations.

Really focusing on each muscle during the exercise, made it easier to contract the muscle, and hold for longer, tighter. So this week I’m definitely putting this into practice more. Even going to try it with the upper body too.

Had a physio appointment this week which was in a previous post here. It was a pure killer one too. The ache and stiffness afterwards was no joke!!

So Wednesday my official 21 weeks post op day is rest day. And that means #terminator3 never seen before. I know it’s pants, but I don’t care I’m watching it. Awful wet weather outside, so no walking planned either. It’s hot water bottles and rest rest rest.

Thursday I’m still aching a fair bit (groin and lower back especially), so resting the lower half and just doing exercises for the upper body. No weights just contracting the muscle and moving them in isolation. Or use a towel to grip and tighten (really helps) I use a towel, as it makes me focus easier on contracting the muscles.

  • Tricep overhead 20 reps
  • Tricep kickback 20 reps
  • Bicep curl 20 reps
  • Lateral raise 20 reps
  • Shoulder press 20 reps

Slow and steady wins the race at this point, keeping it simple and small for now. Not using weights helps with the thumbs and fingers at the moment, which are predictably flaring up.

I’m resorting to using ibuprofen gel 4 times a day, using compression gloves nightly, and splints during the day. ( Night time is when it’s horrendously bad, like being in a vice grips!!) But I have rung the GP so I’m going to enquire on regular blood tests, and better medication too.

Friday it’s my Wedding Anniversary 18yrs married, 20years together. I can honestly say it’s flown by so fast, it’s scary. There’s not a day he hasn’t made me giggle. I would not be without my biggest champion.

And we are off on Saturday to hopefully sunny Barmouth, probably will rain. But no matter, a night away with family to bond, relax and change of scenery too. So Friday was prepping our clothes, packing essentials, and doing good to take for the journey. Sadly tramadol will be also coming along with me too.

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Day 93 #hipreplacement #EhlersDanlosSyndrome

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

After receiving a comment from a fellow blogger (find them here) they suggested I should explain more about #EhlersDanlosSyndrome and honestly I should.

What is Eds?

So Ehlers-Danlos syndromes (EDS) is a group of 13 individual genetic conditions, all of which affect the body’s connective tissue.This Connective tissue lies between other tissues and organs like a glue, keeping these separate whilst connecting them, this glue is tasked with holding everything in place and providing support.

In EDS, there is a gene mutation (like an X Man, the nerd in me loves this!!) that causes a certain kind of connective tissue, what kind will depend on the type of EDS (which type out of 13) (Hypermobile Eds, Hypermobility spectrum disorders, Classical Eds, Vascular Eds. They all fit under these umbrella labels)

This gene mutation is usually a form of collagen, this causes it to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS (NOT ME) My skin has never stretched like that, but I scar and bruise incredibly easy. Individuals with the condition may also be able to extend their joints further than is usual (This is ME) this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, Everyone’s bodies, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, this makes it hard to connect and diagnose, despite this EDS is often an invisible disability.

Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.

Now it’s important to remember my #EDS isn’t the same as another #EDS as we are all individuals, and with that said it’s also why it’s incredibly hard to diagnose. We have a collection of symptoms, that are easily explained away and not connected.

I mean who thinks, velvet soft skin is connected to a thundering heartbeat because you stood up? So they came up with a series of movements to test for it.

The old way to classify Ehlers Danlos Syndrome was to use the Beighton Scale. The Beighton score is a set of manoeuvres used to judge if there is evidence of joint hypermobility. There are 9 points, and a score of 4 or more is considered a sign of there likely being generalised joint hypermobility present.

Now at the time of diagnosis in my early 30s I scored 8 of 9. Now there’s a more comprehensive way of scoring, found here Now I’m older and a lot more stiffer, so flexible I am not anymore. Therefore I would fail this tests above, but that doesn’t mean I don’t have it.

But these new ways of scoring takes that into account. So if you could touch the floor with flat hands without bending legs, bit no longer can you still score a point.

This helps the reclassification of certain symptoms, so I was diagnosed with EDS type 3 which is the Hypermobility type. Now it’s known as hEds Hypermobility Ehlers Danlos.

How does it affect you?

How does it affect me? Good question that I’m not entirely sure of myself. I know I feel pain all the time, from holding my own skeleton together and in the correct position. It’s so easy for my shoulders and hands to go beyond their natural range. Now I personally find this extra lax during my menstrual cycle, it’s like every joint I have comes out of joint, super super easy. It’s due to hormones creating the environment for this to happen around the cycle.

But as I said earlier it affects how I heal, so bones take longer to knit together, but likewise I’ll produce more scar tissue inside healing sites. Scars are often keloid or stretched and wrinkly. I bruise from being barely touched at times.

My three biggest ways I’m personally affected is the early onset of Osteoarthritis, my hip was grade 4, my mobility is awful, but I use to do gymnastics and horse ride. Now I can barely walk unaided. My hands are stiff and painful as they too have Osteoarthritis too.

My teeth are weak and crumbling, and dental visits are scary. For many years I have cried and complained that the anaesthetic doesn’t work, but no one listened to me, and then a few years ago they found it was an EDS symptom!! I have dentist now that knows about this and adjusts accordingly.

Finally how does it affect me, in a major way it screws up painrelief, I’m in pain but the meds don’t work. So fentanyl strongest drug out there? Nah doesn’t work, worst way to find out was when I had my first big op, it was a triple pelvic osteotomies and valgus femur lengthening. I was given Epidural (this does NOT work either) and Fentanyl, worst week of my life. But some gps out there, think you are attention seeking or drug dependant. You need these meds to function, to complete normal daily living, not to get high!

Since my first surgery, we’ve adjusted it to spinal, and morphine pump that I control. Now surgeries haven’t been as bad since thankfully, as I’ve had another 9. I find natural morphine better for me than synthetic versions of it that don’t work.

Now I’ve prattled on long enough, I best let you go. Hopefully by now you’ve learnt a bit more about Ehlers Danlos Syndrome. I’m still learning myself.

10 weeks post #hipreplacement

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

When I first embarked on this journey 9th Jan I can honestly say I was not prepared. I thought I was but looking back now, I know my expectations were way off. I expected to be magically pain free, skipping up the mountains as others are.

Not me, even at halfway through I was beginning to think I couldn’t see a way out, it was never going to happen like it does for others. I was whiney I admit it.

But then just like that it’s started to fall into place. I find myself turning in bed with greater ease, though the pillow is still my friend.

I find walking unaided better around the house, but it still tires out quickly and that brings the limp and thigh pain.

As I said I’m still getting pain at times, from deep inside the thigh, or deep in the buttock, under an old scar. Groin pain occasionally flares up, or the golf ball swelling. And the scar sometimes stings or is itchy? No idea why though.

Stairs I hate hate hate, it pulls at my operated sides knee. But I’m getting up them better, as long as they have either 2 Bannisters or 1 I can hold and stick the other side.

Got myself a new Tee, I had too. It shows I have Custom Parts as my hip replacement is custom made. So I’ll be wearing this to the OT and Hydro appointments.

Day 57 post #hipreplacement

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

This week I’ve been pushing myself forward to challenge the hip and up my stamina, fitness levels.

So it’s all been about increasing the chores around the house, instead of trying to avoid them at all costs.

And using the Red Resistance Band, for all the exercises and not just 1 or 2. It’s made an incredible difference. Before I was doing the exercises easily and 2 sets of 15 reps, now I’m down to 15 reps over all. It’s definitely pushing the muscles to work harder.

  • Glute exercise 15 reps
  • Quad exercise 15 reps
  • Heel Slide 15 reps
  • Short Arc quad 15 reps
  • Hip abduction 15 reps
  • Single leg raise 15 reps
  • Clam sideways drop 15 reps
  • Ankle ball squeezes 15 reps
  • Long arc quad 15 reps

Had to have a break from these in the morning, and finished up the afternoon with these.

  • Hip abduction standing 15 reps
  • Hip extension backwards 15 reps
  • Hip flexion 15 reps
  • Onto tip toes 15 reps
  • Heel to butt 15 reps
  • Mini squat 15 reps

These are my usual post op exercises but I’ve added 2 more which are extremely challenging for me.

  • Step ups (aerobic step) 15 reps
  • Monster walk steps 15 reps

Monster walk is my funniest one, but really engaging the glutes. Weirdly I have no Trendelenburg gait walking like this?? Wonder why?

Day 41 post #hipreplacement

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

Following on from the success of Sundays first true day of using a walking stick 100% of the day and night.

I wanted to truly test myself, as Sunday I went from a bungalow to a family members house, so the only thing different was the stairs.

But this time on Monday I needed to post some things, collect some parcels and buy some items, so I wanted to try this out with a walking stick.

I managed to walk up and down the shop layouts, get in and out the car a few times, and I was happy to move around alone (which means no hubby glued to my side, which i often make him do)

We didn’t do much, but overall I was happy with the progress, and it was my version of physio without aggravating the sciatic/piriformis area.

So for me it was a big milestone, to get back the confidence to be around other people, navigate the difference inclines and slopes.

I got back home, and needed a hot water bottle and rest for aches, and I was extremely tired. But I’m a happy bunny x

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.

2 weeks post #hipreplacement

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

I swear time is flying, maybe because I’m ensuring I’m busy each day with at least 1 chore to help, or doing my daily physio.

When I’m not active, I’m resting but in a productive way too. Rather than just lying down all day and night vegging out. Even small glute squeezes while watching TV are super useful.

So here we are, I’ve come on in leaps and bounds, had highs and lows, and followed these exercises to the letter.

The one crutch walking is getting straighter and easier, less leaning and I’ve picked up the pace too.

My biggest change today is staples out day, just thinking about someone touching the wound makes me queasy. I was dreading/ looking forward to this day at the same time.

I hate how it feels coming out, it stings and pulls, makes me feel faint. But once it’s over it’s better, even though that whole day it will be nagging aching.

#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.

6 weeks and counting…. #THR

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

IMG_20181013_153557_556

I find myself imaging the worse, or thinking I don’t even need it, what am I doing this. The stress it puts the family under, I feel guilty over.

But then, I’ll do something ordinary, like Hoover a room, and BAM like a bolt of lightening, I will be reminded to why I’m doing it. Why I’m taking a huge leap into the unknown and risking what I have, for what could be…. It’s no easy decision.

This week has passed with ease, finally feeling on the up from a bout of laryngitis. We have rearranged our bedroom for ease, so I can easily get into bed and the bedroom if I have a walker (I’m aiming for crutches, as I’m a whizz on them)

I’m currently writing to do lists, packing lists (weirdly I never end up using most of the stuff though) and thinking ahead of what I need to buy.

So far I already have a grabber, useful for picking things up so you don’t have to bend. As for 6 weeks I will not be able to go past 90 degrees bending. This can dislocate the hip. (To be honest I rarely do now, same reason)

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Then I have the life saving perch stool, which moves from bathroom to kitchen (via hubby) as it’s good for drink/food prep in kitchen, and for washing/bathing in bathroom.

malvern-vinyl-seat-perching-stool---adjustable-height-with-armrests1

And again for washing and bathing I have an over the bath board. So you can progress from perching and washing out the sink, to sitting over the bath and using a shower.

BathBoard

So what else do I need? A shoehorn, and sock machine? I’m not going to get them, as I do have help via husband and daughter, so I’m sure they will assist me.

My packing list is

  • Nightgown/Pajamas
  • Robe
  • Comfortable clothing (sweatpants, loose shirts) – ( I arrive and leave in these)
  • Slippers
  • Shoes
  • Toothbrush/Toothpaste
  • Razor
  • Soap/Shampoo
  • Feminine Hygiene Products
  • Tissues/ baby wipes/ mirror
  • Book
  • Phone and extra long charger
  • Headphones
  • Eyemask/ ear plugs (I use headphones though)
  • Crutches
  • Medication
  • Squash/ fizzy pop
  • Boiled sweets or mints
  • Stash of snack food just in case

And at home I will be trying to prepare some meals to freeze in advance, for hubby. Keep on top of the washing, housework as best as I can. And of course keep going with my exercises I’m doing. You can see them Here

These have helped massively throughout this recovery period, and I will continue to use them.

Finally getting answers?? 7 weeks til #TotalHipReplacement

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

Well I’ve had the long awaited rheumatologist appointment, and it wasn’t at all as expected.

I wasn’t sure which would be a good result, if I’m being honest. As rheumatoid arthritis is no laughing matter, though thankfully there are certain medications to help with the inflammation.

However, I have certain distinctive wear and tear joint space narrowings of the joints, and none of the rheumatoid symptoms, so this meant it’s more likely my #EhlersDanlosSyndrome causing early Osteoarthritis, but the inflammatory kind. So still erosive and very painful, but less likely to be helped with medications that they use for rheumatoid arthritis sadly.

So it’s a limbo really, I can brace, splint and tape them up. Take ibuprofen, use hot water bottles and do physio and see if it helps. Though I am doing all these things already to be honest. So my future of a crafter (Jewellery and papercutting) is looking unlikely!!

I’m going to try and tinker more with food groups and try to find my triggers, if it is triggered by food that is.

So it seems my Zebra status is causing my early onset of Osteoarthritis which is notable in the hips, and now the hands. I haven’t dare touch upon the fact my ankles roll all the time, knees ache funny and elbows are odd. Because he signed me off straight away. So I think he just believes I need physio and perhaps go back to gps for help with better painkillers. (Do better painkillers even exist? Ones that don’t cause hair loss, sleeplessness, racing heartbeats, brain fog, nausea to name a few of the lovely side effects…)

I am allowed the kenalog injections in the hands, but is that in 1 joint, multiple joints? As sometimes it’s 1 thumb, 1 wrist, and 1 finger all at once! It’s unpredictable as to when and where it’s going to hurt, so taking painkillers seems weird. Ideally just reduce the inflammation would be a good start.

For now though I must just muddle through, manage the pain as best as I can, because it’s a mere 7 weeks now until my Hip Replacement Surgery. And I have so much to do to prepare for that. Any handy tips or hints? Let me know