Day 94 Weekend vibes

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

It’s a warm ish looking weekend, so it’s a nice day for my belated Mother’s Day meal with my eldest daughter.

Off to Aston Marina for an extra special treat. An afternoon tea.

So no physio exercises for me today, it’s full on family time this weekend, making all that work during the week worth it.

Though walking up this bridge felt like physio, I did it unaided (no walking stick) but boy oh boy that was HARD.

I love boats, there’s something relaxing about water and the boats there. The wildlife around them too. It’s a lifestyle I envy, but I’m realistic and don’t think my body could cope with boat life sadly.

The meal was Afternoon Tea, which I can confirm was absolutely delicious!! And extremely filling too.

Four types of sarnies, salmon, cream cheese and cucumber, cheese and tomato, ham and mustard. And a HUGE sausage roll slice.

Next was the scones with clotted cream (cream first for me) and strawberry jam. We had a plain and current scone.

Lastly it was the choice of the little cakes, a cherry bakewell, brownie, macaroon, and raspberry tart. With the cutest flowers on too.

We didn’t walk far but I was walking unaided around the marina, and it was good practice. Though totally exhausting.

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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.

Day 92 post #hipreplacement

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

It’s been a week since I saw the GP about my hands, and I’ll be honest the increased ibuprofen and ibuprofen gel hasn’t really made that much of a difference painwise. But maybe a week is too early to tell? So I will give it longer.

Wearing the splints help get things done but are cumbersome and irritating. But wearing the gloves at night are good, so that’s a win!!

Splints with weights are Interesting let’s say that. It’s hard while my hands are like this to actually hold weights, so in place of weights sometimes I use resistance bands instead.

Its not the weight itself I find difficult, more the grasp, it could be a pen at times and I simply can’t hold it. Frustrating to say the least.

So working the hip it is today, give the hands and shoulders a break. Though I’ve decided I’m staying away from any exercises that mean I have to lie on my operated side. It’s too dreadful for words.

  • Hip Flexion ankle weight 15 reps x 2
  • Hip abduction ankle weight 15 reps x 2
  • Hip extension ankle weight 15 reps x 2
  • Calf raises ankle weight 15 reps x 2
  • Heel to butt ankle weight 15 reps x 2
  • Mini squat 15 reps x 2

Not too much today, as joints are extremely lax this week. It’s the old Ehlers Danlos coming out to party, and by party I mean utter misery ball of pain.

13 weeks post #hipreplacement

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

Goals for this week is to keep up my red band resistance exercises, but maybe try and add some ankle weights in some exercises, such as step ups, hip abduction, extension and flexion. (as the band gets hard to use at times)

To roller my scar area, to try and awaken some nerves and break down scar tissue. The area is still NUMB as hell. I feel pressure if I press down, but the sensation of touch has gone altogether.

Had another #Geocaching adventure, I love this as it gives you a purpose to get outside and walk where you might not of thought to visit. It’s chilly, but wrapped up from the biting wind, we set off to find 1st of 3 caches, first one gives co-ordinates to the second and so on, so no treasure, just hunting the clues.

First cache above, have us numbers for the second cache below.

More numbers to add, to find the third

Oh no, cache 3 is missing (we have found it a few years ago) instead this tree had an egg in the trunk. So careful not to disturb, took photo to share with the cache owner.

Oh well had fun finding the clues, time to head back after walking in heather and weird spongey grass (adder fear was real at this point)

On the way back to the car, Mr Moon spotted on the GPS another cache close by, so we headed to this one, making it 4 in one day!!

Erm…. This wasn’t hidden, it seems someone forgot the memo. Not to worry logged we found it, and carefully hidden once again.

As much as I love all this walking, my hip still has its pain moments, and nags to go and rest. Walking is good for me, mentally especially. But physio works on the actual muscles I need waking up, so it can’t replace that for me.

I was pleased to get home and rest my aches with a hot water bottle, knee twinges and thigh pains are still real here. And I am still on a walking stick, just not strong enough to walk unaided outside.

Day 90 #hipreplacement

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

It’s always up and down health wise, I guess it’s the #EhlersDanlosSyndrome not really helping. But I’m pleased to say it’s not actually my hip causing any grief at the moment.

And because it’s that time of the dreaded month, every joint comes out to play. Cleaning the cooker, my shoulder decides to pop out!!

So with this is mind, I’m thinking I need to keep on going with the occupational therapists shoulder stabilizer exercises.

  • Ball on wall circle left 20 reps x 3
  • Ball on wall circle right 20 reps x 3
  • Ball on wall up + down 20 reps x 3

  • Band shoulder abduction 10 reps x 3
  • Band shoulder internal rotation 10 reps x 3
  • Band shoulder external rotation 10 reps x 3
  • Band shoulder extension 10 reps x 3

All this exercise is always to help stabilise my joints, help my muscles and tendons do the work the joint should actually do.

Day 89 #hipreplacement

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

Yas!! The sunshine has returned, it’s a little nippy out, but dry, which means it’s a good day to get outside for a walk.

With a mission to go Geocaching to make it a little more fun.

#

Geocaching is an outdoor recreational activity, I think of it like treasure hunting!!, in which participants use a Global Positioning System (GPS) receiver or mobile device and other navigational techniques to hide and seek containers, called “geocaches” or “caches”, at specific locations marked by coordinates all over the world.

These can be filled with little gifts, like a pencil sharpener, or pretty pebble, or just paper to write that you found it and what the date is. Really good ones have disposable cameras to take photos of you finding it.

I love Geocaching, the aim is to take you off the beaten track a bit, and show you an area that is pretty, or stunning views.

Came across a Deer bone first. Not sure it’s treasure we want, but still privileged to see it.

Aiming for the funny tree, let’s see if we can find one?

Path isn’t always easy though.

I see one!

No good gifts, but logging that we found it. Back to hiding it again. Making sure #muggles don’t see us.

Sarnie break, and much needed leg break too. Though I can feel such improvement in this hip. Hope other one stays behaved. Hand is particularly sore on my walking stick though.

Another cache to find, but harder this time and definitely prickly too. But we had success. Again no gifts as it was an old camera film container.

Hidden once more, it was time to meander home. The routes have took us on uneven grassy tuffs, and heather filled areas (bit scared of adders)

Only beast we found was a millipede.

Nice to see new growth coming through, and the dead old brambles disappearing now.

Following husband’s footsteps so I don’t stumble, though I did kick a rock which hip did not like at all.

Once home we were all shattered, I ached everywhere, especially glutes and quads.

Day 88 #hipreplacement Family Time

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

It’s important to have some down time and not over train, ie do too much physio. As I have found this has helped me overall, to have rest days.

But as every parent knows rest days aren’t truly resting and not moving, it’s purely me not doing specific physio exercises.

Instead I did something a bit more exciting, I finally saw my grandson Leonardo, nearly 3yrs old he’s full of beans and hard to keep up with. I say finally as I’ve been poorly, then she was poorly too, then life gets in the way etc etc…

The trampoline was out for me obviously, but Nardo loves the trampoline and my youngest Daughter is doing Best Aunty and joining him, but I did lots of getting the ball, and picking up toys which soon had me tired out.

Just walking unaided up and down the garden was all the physio I needed. And he was perfectly behaved, but I was shattered!! Aching thigh and aching back, so once he evening came it was snacks (maltesers and crisps) and #Glass film

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.

Blog Book Tour #KenOgilvie HOUND

Archive, blog book tour, Blogger Reviews, Events

#AD GIFTED for review, and all opinions are my own. I’m blessed to pick my favourite genres of books so it’s rare I don’t enjoy them.


Hound (Rebecca Bradley #2) by Ken Ogilvie

Available from AMAZON CA AU US UK

Do you love mysteries with intricate plots and new locations? Meet Detective Rebecca Bradley as she faces an escaped serial killer whose next target IS THE POLICEWOMAN HERSELF.

Rebecca Bradley put serial killer Jackie Caldwell in prison. She had the assistance of Hound, a giant young man who’s in love with Rebecca.

But then Jackie murders a prison guard and escapes. She heads north to her home town of Conroy, where she hides out in the forest to evade a massive police search.

She’s burning with hatred for Rebecca, and wants revenge for the financial ruin of her family twenty years ago in a goldmining scam by Rebecca’s villainous grandfather.

Jackie also hates Rebecca’s wealthy father, who betrayed and then helped the police apprehend Jackie’s sleazebag lover, Kingsley McBride.

Hound pursues Jackie in a bone-chilling chase through the eastern Georgian Bay forest . He faces a race against time to save the woman he loves.

Discover a new crime writer who will have you gripped till the pulsating end.

THE DETECTIVE
Rebecca Bradley was psychologically damaged by the unsolved murder of her mother when she was eight years of age. Driven by her mission to catch the murderer and make him pay for his crime, Rebecca is obsessed with justice and retribution, and is haunted by dreams of revenge.

REBECCA BRADLEY SERIES
Book 1: HER DARK PATH
Book 2: HOUND

Author Bio

KEN OGILVIE is a new mystery writing author, with Her Dark Path as his first book. Prior to taking up writing, Ken worked in a variety of roles in the environmental policy domain, including positions with three governments in Canada (Federal, Manitoba and Ontario) and as the Executive Director of Pollution Probe, one of Canada’s premier environmental groups. He remains active as a consultant on energy and climate change, and sits on the Boards of two national nonprofit organizations – the Pembina Institute for Appropriate Development, and Quality Urban Energy Systems of Tomorrow. He is well-known across Canada for his environmental work, and has received two honourary doctorates from the University of Waterloo, Ontario, and Thompson Rivers University, British Columbia.

My Review

While this is the first book I’ve read by this author, it is in fact book 2. But I think it works well on its own as well.

Rebecca is haunted by her mother’s murder, while knowing her father probably knows something, but that he won’t share! A strain on this relationship means they no longer speak. So sad to see a relationship breakdown, but I can understand why it has.

Set in Canada, I can recall my own Canadian adventures to set the scene in my mind, means that the character Mathew is a relatable character and you can imagine it well living off grid in such a vast wilderness. I often daydream myself of living off grid, it intrigues me.

It goes from past to present in seemless manner, and definitely had me gripped. Some parts confused me so needed to be reread, but that could just be me reading too fast, and not retaining the information well. But over all a highly enjoyable read, and I’d definitely read more by Ken.

Day 85 monster walks

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

I am loving the resistance band monster walking, I feel it really is targeting the weak muscles, and it tires them out pretty quickly.

So todays physio as knee isn’t too bad, is absolutely simplistic.

Monster walking (Red Band) 50 reps x

    2

    Step ups (No Band) but no stick 50 reps x 2

    So little done, but my god it hurt my back (probably piriformis area) and my thighs in a muscle type way.

    Caught up with the GP to discuss my hands and my inflammatory arthritis. And although it wasn’t what I wanted to hear (ie they can’t book in steroid injections) as the bone is destroyed over time, so it’s best to not get too many.

    Instead the plan is to wear the splints more, the gloves every night. And take my 400mg ibuprofen every day up to 4 times a day, ideally 3 times a day and map how it affects the pain and mobility. Also to use ibuprofen gel, and keep up the exercises too. If they all still don’t help, to then go back and speak again on options for pain reduction, and stiffness.

    Not what I thought would happen, but hell I will give anything a shot!! And obviously my trusty hot water bottle and wheat bags are always my trusty friends too.