19 weeks post #hipreplacement

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

The weeks are flying by, and with the warmer weather we as a family are getting busier, which is lovely. But boy oh boy I’m still paying a high price for any activities.

Which I wholeheartedly admit is gutting. I truly wanted, wished and hoped that by now this magic bullet surgery would be the answer and I’d be skipping into the sunset.

And while this surgery has been amazing, it’s clearly not the sole issue I thought it was. I’m struggling with my hands alot, but not just them though my ankles, knees and shoulders too and I feel cheated. All I’ve ever wanted is my life back, who I was at 32 and I’ve chased this dream headlong ever since.

I had no concept that I was literally fixing the hips to then swap the goal post and need intervention on other joints.

So I’m not going to compare to others healing times anymore, it is what it is. I’m not sure if it’s the Ehlers Danlos Syndrome, Hip Dysplasia or Arthritis that is ruling my life, but something is, more than I care to admit too.

It sucks that I have some issues, I have to remember not to focus on them, I need to remember the positive thoughts and drive my energies into them.

No physio appointment booked this week, so physio at home is foundation basics to keep movement going and no stress out other joints. Using ankle weights for resistance.

  • Hip abduction x 15 reps
  • Hip extension x 15 reps
  • Hip extension (backwards) x 15 reps
  • Hip flexion x 15 reps
  • Single leg lunge on areobic step x 15 reps
  • Monster walk x 30 steps

Going to work on these while I await the next physio appointment.

Found these exercises on Pinterest and I will try to add some of these are well, later on in the week.

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Day 114 post #hipreplacement Bionic Camping.

Archive, Family Adventures, Hip replacement

Marking the day, as today is the day we are driving around 4hours to go to Cornwall to camp!!

Yay!! Happy days, excited to say the least. Keen to see how the hip behaves, and how I cope with the long long drive too. (I’m a passenger at least)

But I will be prepared with plenty of ibuprofen, the gel, and cushions, and probably a hot water bottle.

So the last few days have been mad dash packing, hunting things down, cursing and feeling overwhelmed. But it’s all worth it, in the end.

Heading to Tintagel for a special event, a Karen Kay Fairy Event

Tintagel Faery Ball & Fairy Fayre – Saturday 4th May 2019

Venue: King Arthurs Great Halls, Fore Street, Tintagel, Cornwall, PL34 ODA, UK

Featuring Special guest artist Jasmine Becket Griffith at the daytime Fair

Join the Tintagel Ball Facebook event page

Returning to Tintagel, Karen Kay’s Faery Events is to host an Arthurian themed evening Faery Ball at Beltane (Saturday 4th May 2019) at the King Arthur’s Great Halls in Tintagel, Cornwall.

With music from Cornwall’s 3 Daft Monkeys, plus duo, Katharine Blake and Charlie Cawood. Katharine Blake is the founder, musical director, composer and arranger of the unique and other-wordly classical chart topping choir Mediaeval Baebes. Formed in 1996, the group have toured internationally, released 8 studio albums, won an Ivor Novella award for their performance on the BBC s serialisation “The Virgin Queen”, and received two Emmy nominations as the featured artist on the theme tune for the hit TV show “Victoria.”

So phones off, social media break and family time here we come!! See you in a few days time xx

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.

Day 87 #hipreplacement

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

This weather is causing pain pain pain, and a healthy dose of stiffness and immobility with that.

So far this week to control the hand pains I’ve been taking 400mg ibuprofen x 2 but I’ll admit it’s not really helping, on top of that I’m using ibuprofen gel. At least I can splint them, and use gloves.

However the hip isn’t feeling any benefit from Ibuprofen, but it aches deep in the thigh crease where pelvis meets the thigh, Or bikini crease area I should say. With the increased rain, I’m noticing that the hip still feels seized up and stiff, exactly like it did with Arthritis?? So for this I’m adding Paracetamol. And see if that helps.

Today’s physio is focusing on lubricating joints to ease pains.

Shoulder exercises

  • Circle ball on wall left 10 reps x 3
  • Circle ball on wall right 10 reps x 3
  • Push ball on wall up and down 10 reps x 3

Then hand exercises

  • Make an O with each finger 10 reps x 3
  • Raise thumb 10 reps x 3
  • Thumb abduction 10 reps x 3
  • Thumb scoop and up 10 reps x 3
  • Wrist up and down 10 reps x 3
  • Make a fist and open 10 reps x 3

Hip exercises

  • Glute squeezes 10 reps x 3
  • Quad exercise 10 reps x 3
  • Short Arc quad 10 reps x 3
  • Ball between Ankles squeeze 10 reps x 3
  • Ball between knees squeeze 10 reps x 3
  • Hip abduction 10 reps x 3
  • Single leg raise 10 reps x 3

For these exercises I find I can do many while sitting down, watching the TV. And I break them down in 3 sets, so one set in the morning, then a set after dinner, then one more in the evening. So although it looks a lot to do, it’s easily slotted into my day.

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!!

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 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.