New Month New Challenges.

Archive, Arthritis, Challenges, Randoms, Miscellaneous, Covid-19 Lockdown, Covid-19 Week Ten, Health, Hips, Hypermobility, Hip replacement

It’s 1st June, and if you have certain aged children, they are meant to be returning to school. Due to some lockdown restrictions lifted. And we can now see family outside in gardens or parks.

And with this change, we can finally collect our daughters belongings from campus. So that’s our mission today.

We had to book a slot, be as fast as possible, but also clear it out thoroughly. It’s a sad chapter to close, all those drunken pre drink get togethers, Sunday dinners made with pals, and cosy movie nights. All gone forever, not to return to this building again. It’s a process to work through emotionally.

Also today, it’s the start of 10,000 steps a day challenge for June, set up by #VersusArthritis

You can sign up here if you’d like to join in Miles Together

Obviously I could never do 10,000 steps let alone do them daily. But I’m here to support and corale all those taking part, and share their just giving pages too. I think it’s a great get together, and the Facebook group is full of wonderful people, find them here

Ninth Week #SelfIsolation

Archive, Arthritis, Covid Week Nine, Covid-19 Lockdown

Lockdown has been adjusted slightly, though none of it relates really to myself. Though we eagerly await being allowed to empty campus rooms.

Now the exercise can be more than once a day, and for as long as you like,and even drive to it, in my wildest dreams I can’t personally walk more than once a day, but it does help fitter and healthier people.

Driving to exercise definitely helps me, means I can walk more local remote areas, without being done in hipwise before I’ve left the street.

Mentally I feel a weight has been lifted, anxiety has dampened down, now it’s just the sadness of missing my daughter’s birthdays, wedding anniversaries, grandchildren’s birthdays and it looks like father’s day is off the cards like mother’s day was too.

Being able to walk the waterways has given us some great opportunities to watch the sun go down, and reconnect with energies that help us feel grounded.

Easing off finally pain wise from that dreadful flare up, still taking my CBD oil on top of Paracetamol and Etoricoxib. And it’s going well, I’ve resisted to taking tramadol which I’m pleased about. The CBD oil I would say eased anxious thoughts, helped me relax around my pain, which in turn eases the flare. But I’m unsure if time itself would of also done this. So I’m continuing, and seeing of the cycle of huge flare around menstruation time pops up again and if it helps.

I’ve taking a backseat with my fitness programme as I had too, now it’s more walking based and some joint stability exercises. Rather than exercise to lose weight (Though I know I’ve gained weight sadly) I’m also still learning my languages, as I was before the lockdown. I do these for my own sanity and not from enforced lock down.

Ehlers Danlos Syndrome Issues

Archive, Arthritis, Covid Week Eight, Covid-19 Lockdown, Health, Hips, Hypermobility

EDS Strike’s back!! This last couple of weeks have been honestly quite hellish. Pain is all consuming and it feels like there’s no end in sight.

This is a dark dark place to find yourself in, felt trapped and lonely and deeply depressed. It’s not often I’m this low, and I usually hide it away from others, except family as they physically see it.

But as it’s May it’s #EhlersDanlosAwareness month I thought I’d share my woes.

I have EDS Hypermobility type, formerly known as EDS type 3.

Hypermobile EDS

People with hEDS may have:

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person’s medical history and a physical examination.

On top of this I have MCAS too Last Cell Activation Syndrome,in which I can be allergic to the air, a scent, a food, a colouring at any time! Thankfully though mine seems to be more flushing and heating. So it’s manageable.

For my EDS my hips, ankles and shoulders are the most affected. And recently it’s been my shoulders, Ive wanted to amputate them so many times this month already.

To combat the pain and instability, as they are subluxing while dressing or brushing my hair, Ive been going back to basics, to pull the ligaments and tendons back into line to hopefully make the shoulder more stable.

Lying in bed with it just hanging down is literal heaven right now. The arms weight naturally pulls it right in the joint, so it sits comfortable.


With the ball I rotate it in circles going clockwise, then anti clockwise, and gently roll up and down. Though SMALL movements to ensure it stays in joint and not extending too much.

There are some amazing YouTube videos by #JeannieDiBon https://youtu.be/jQjKzp-QxWg

And you can find her on Twitter too, for a wealth of advice and guidance.

@jdibon Twitter.

19 Weeks #Etoricoxib

Archive, Arthritis, Blogger Reviews, Events, Covid 19 Week Seven, Covid-19 Lockdown, Health, Hips, Hypermobility

I’ve had to finally ring the GPs as I’ve been struggling a lot pain wise, out of sheer desperation I rang before putting in my repeat. I can honestly say I’m having the biggest flare I’ve personally ever had. Wonder if it’s lockdown related?

After a lengthy intro on covid and how to ring 111, I finally got to a human to book a telephone appointment, and it was literally in 5 mins, so that was fast.

We talked through the pros and cons on all other meds I’ve tried in the past, like pregablin (made me slur and fall over, not good when you already have mobility issues) amitriptyline (groggy forgetful and felt like death) naproxen (heart racing and no sleep for days)

We’ve sadly concluded that while steroid injections are NOT allowed here, I have to go and use the pain killer ladder,which is my splints gel paracetamol, etoricoxib and tramadol (reluctant to use as I hate the side effects) I had no choice but to agree.

They sent me a new gel to try, Ive only had over the counter ibuprofen gel before. Now I have this

Still testing my #SimplyCBD and it’s been just over 2 weeks, I will say no change yet in pain levels, but as ever some things take time. Perhaps while in a huge flare it’s unfair to judge, so I’m going to continue and try and get on top of this flare up, and see how it all goes. I’d rather this work than me taking tramadol again!! It took a lot of pain sweat and tears to come off that.

Walking Unaided Week 69 Post #HipReplacement

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Six, Health, Hips, Hypermobility, Hip replacement

I’m FINALLY doing it, not always especially well. And often with a bigger pay back than I’d like. But it’s a foundation to work upon.

My desire to ease the pain and disfigurement to my walking stick hand has drove me to walk unaided, regardless of trendelenburg gait. I’m experiencing the biggest arthritis flare I’ve ever had, could this be lockdown related?

The walks are usually pretty flat and even ground, as I’m not looking to run before I can master a real walk.

Sadly the walks we’ve had have featured some nasty fires lately, probably due to the lovely weather we’ve had, making everything so dry.

Air was heavy with the scent of smoke and burnt trees. Sad to see it damaged. But from this we’ve seen new life sprout up already in a week.

My biggest issue with walking unaided is obviously the fatigue afterwards,it’s all too consuming. And secondly is the pain which spikes up. Then thirdly is the swelling the leg always has afterwards. Measuring on average 2 inches fatter than opposite hip.

For now I’m enjoying the accomplishment of walking unaided, even if it does cost me a few days to recover from.

68 Weeks Post #HipReplacement

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Five, Health, Hips, Hypermobility, Hip replacement, SURGERY

I’m missing my physiotherapist for sure. But I decided to not let my physio routine slip. Though with my hands and hips I’ve had more flare ups since this all happened, wonder if connected with stress and anxiety??

Most days I’m doing static physio exercises, incorporating the Bosu ball as it’s amazing for balance and micromovements in the muscles. Feels like for less exercise I’m working the joints more.

While I feel improvement at home, I’m definitely NOT with walking, which is a huge disappointment if I’m honest. My hand is wrecked from my walking stick, it’s also dislocating/subluxing my shoulder too!!

So new goals I need to try and walk without it, but I’m still struggling distance with it. Catch 22. Though I have managed some walking without it (heavenly) while it lasted.

Walks are beautiful though and great for my mentality too. I’m just so so broken afterwards. Like 5 days totally off exercise and much movement after a walk. Anyone else? Leg swells up too.

The gradient is flat and not hilly really, even base too. So confused as too why it’s still causing so much groin pain.

At least it was a good opportunity to test the hip out, it’s just a shame I can’t ask for advice or see the therapist about it all.

17 Weeks #Etoricoxib

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Five, Health, Hips, Hypermobility

Its been a struggle, the last few weeks my hands have FLARED up so so bad. Each night it’s at its worst, feeling like they are being crushed in a vice, but they are simply resting.

My worst hand is this left one, the one I daren’t ever have injections I again after that disaster last time. Random swellings and crushing sensations in this one every day and night.

Right one better but not 100 percent. Has now weirdly developed a dip or dent where the joint is. It’s new to me, though I know others have it. Not sure why it’s appeared at all.

Feel like I need to discuss medication with the GP but also terrified to go. Not even sure there is anything they can do, I know I need surgery, but until I walk unaided it’s not even an option 😭😭😭 Has anyone else had an increase in pain?

Decided to source the 8 paracetamol a day, and take my etoricoxib as planned too, with an additional cbd oil. Could be pure placebo,or snake oil. But I’m willing to give it a chance, anything to settle these hands down. Started on Friday, so let’s see how this works out.

65 Weeks Post #HipReplacement

Archive, Arthritis, Covid 19 Week Three, Covid-19 Lockdown, Health, Hips, Hypermobility, Hip replacement, SURGERY

As you can guess, Physio is cancelled at the hospital. Which I am obviously sad about, but it’s understandable too.

As we go through this third week, things are getting into a steady routine, fitness is going well, and at least once a week we are doing a walk outside.

As you can see, it’s peaceful and relaxing. We also saw so many Peacock butterflies along the way too.

The Bosu ball is keeping me fully active at home. Not just for lower limbs like I’d do at Physio at Hospital. But I’m even doing some arm work, via tricep dips and press ups. It’s very versatile.

Some exercises to give you an idea, I bought my ball from #Aldi and it was £25.99 I believe it’s even cheaper now. The official ones are well over £100. But this feels exactly like the hospital one.

My newest exercise is mountain climbers. Not at a fast rate, but slow and learning to lift the knee up. Building the range of motion up.

How are you doing Second Week #SelfIsolation

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week Two, Health, Hips, Hypermobility, Hip replacement

As we start to form new realities and routines, how are you doing?

Are you being super productive, active and learning new skills? I’ve seen a new love of baking on Twitter and people taking up Joe Wicks exercising.

Whereas I also see lots feeling lost dazed and confused, and to be honest that’s been me a little bit. But I finally realised it was me watching the news religiously and absorbing as much information as possible, which now with hindsight was my worst decision. It started to feel all too oppressive and miserable. Like your taking on all the world’s negative energy.

So I’ve had to take a step back in time, back to 2009 when I had my Triple pelvic osteotomy and femoral osteotomy done. This rendered me completely housebound for a very very long time, and at no time was I miserable from it. So stepping away from Statistics that are hammered home to you each night, and turning off the news.

I realised I needed to get back into being me, and my usual routine, which is working out for physio, as my hip replacement recovery is still on going. And using down time to read, carry on learning my #Dutch and #Swedish and maybe when hands allow colour in too.

I use the #LosingWeightApp for Men. It’s great as you can customise it for no impact, and no jumping.

For example, here are the exercises, ranging from 12-14 exercises and 8-10mins of time.

For the languages I love Duolingo and it’s been a fun journey. I had already started way before all this happened in the world. As a fun way to occupy and work the brain for 10- 15 mins a day.

Easy to use and actually a great time filler, you can do as much or as little as you like, and whatever language you desire too.

So that’s week 2 we’ve all completed. Give yourself a minute to embrace that victory. X

What a week of change!! First Week #SelfIsolation

Archive, Arthritis, Covid-19 Lockdown, Covid-19 Week One, Family Adventures, Health, Hips, Hypermobility, Hip replacement

Last week I was discussing self isolation and how as a disabled person it wouldn’t be any different from my main life.

How wrong was I? It is different, we can no longer see family members, in fear we catch something, or worse pass it on to loved ones. The threat and fear of medication storages are luming in the back of my mind.

And the staggering dismissal of the deaths as they have pre existing conditions have floored me. Do they not realise, it’s not just end of life people, but people that could live another 50+ years in normal circumstances.

But here we are it’s anything but Normal is it? Schools shut indefinitely, so we collected our youngest daughter on Thursday 19th March so she wouldn’t be stuck up there alone. Though I worry equally about my other three daughters and their families.

The world is different and how different it stays remain to be seen. I’m not ashamed to say I could cry, scream, feel helpless and almost driven mad with what ifs. But I know it won’t help.

All I can do, is reduce the amount I eat and treat it with mindfulness so I can go without more, which in turn means less trips out to supermarkets.

Try to occupy my mind (As that’s my worse enemy) and perhaps step away from social media as much as possible. Everything feels so trivial in comparison to this.

So far we can still walk in the countryside, so I’m doing this for pure mental health, and vitamin D. I can handle the pubs, restaurants and cases, and retail shops shut. But it’s the but wrenching feeling, that you may never hold loved ones again, parents, grandchildren, children. It’s totally Heart breaking.

We celebrated Ostara in the woods, it felt good to have brisk winds whip around our faces, it feels good to be alive. The blue skies and birdsong lifts the spirits, and it was good to snatch that freedom of outside. I have no problems of avoiding shops, pubs but being outdoors is what feeds my soul.