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.

14 weeks #Etoricoxib

Archive, Covid 19 Week Three, Covid-19 Lockdown

Onto starting my third month of these, my second month at 90mg dose. And I am seeing and feeling an overall better relief. I have 8 left but ordered more, and I’m hoping they stay available.

It’s not a total relief, but better. Although this last week, I’ve found my #Arthritis as a whole has massively flared up, probably triggered from poorer sleeping, the time of the month!! As this makes all my joints super loose, thanks to #EhlersDanlosSyndrome

Joint slipped out again recently, so I spent the night wide awake, feeling like the thumb was being crushed! Only ice and freeze gel got me through the night, with lots of tears too.

I would take the 8 paracetamol I’m meant too, but the world went mad, and there’s never any available. So I’m rationing the ones I have.

And like others, I have no chance of any treatments either, as all OT, Physio and Micats are cancelled.

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.

Self Isolation

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

As a person that is usually stuck indoors, my only appointments are being at the hospital physio once a fortnight (I’ve cancelled for a month) or going out for a brisk walk. Me being trapped inside is nothing new to me.

First thing first, stay in a routine. It’s important to get up and dressed, especially as depression and apathy will take hold if you don’t. It’s better to structure your day, as you feel more productive.

So what can we do

DIY,Garden

If you are able bodied, then maybe is a this time to catch up on all the diy you’ve been meaning to do. I would love to do this, but it isn’t possible sadly. I can’t even garden, not that I have green fingers either though.

Exercise

I personally wear myself out with daily physio,so not only am I working the leg out and trying to ease arthritis symptoms, it occupies my mind too. I find it fills a lot of my day up, as I need a long time after to recover from it too. Great mood booster though.

Craft, Hobbies

I love crafts, I have made jewellery, papercutting and I love colouring in books too, they ease the mind and fill up good chunks of time. This for me is limited now due to my hand arthritis. But I love them when it’s possible.

Reading

Who doesn’t have a book list as long as their arm, but always feel like they have no time to read. Well now you do, it is one of the most peaceful times to snatch for yourself. I’m going to re-read the Ink Heart trilogy and Beautiful Creatures.

Prime,Now,Netflix

It is a good time to catch up on tv series, binge watch all that you have saved. I have a love of European Netflix shows,a good scandi noir helps me through the long days. The Flash, Altered Carbon, Elite, Stockholm Requiem.

Organise Wardrobes

I actually badly need to do this myself. I literally live in work out wear and pjs. But I have clothes for every occasion and am a hoarder too. So it’s time to decide what to charity or bin, or give to family. Lots of ideas on Pinterest and YouTube.

Stay safe guys xx

#Halsey Manic Tour #DateDay

Archive, Family Adventures

It’s finally here!! After the disappointment of the #LanaDelRey concert being cancelled, we’ve literally counted down the days to this event!! Though now it’s here, I’m nervous due to the coronavirus if I’m honest.

Your Visit

Coronavirus (COVID-19) Update

As the coronavirus situation evolves, the safety and wellbeing of our visitors and staff members is our number one priority.

At this time, the risk to individuals is low and all of our events are going ahead as planned. The guidance from the Government to music fans attending music events in the UK and to anyone involved in tours in the UK is to check with the official Government news sources: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

We will continue to review our policies and procedures in line with updated health advice and guidance. Which at the moment is recommending the use of tissues if you sneeze or cough and regular hand washing. To this end, we have hand washing facilities in all of our venues and additional signage to highlight these best practices and to reassure the public.

The Government has now produced its coronavirus action plan which you can read here. The 28-page document outlines what people can expect across the UK.

More advice on coronavirus and safety precautions can be found on the website of Public Health England here.

So we went

Instead of all we had planned, we are staying at home for the day and only coming out for this event. So no junkyard golf and club crawl beforehand. Gutted but I understand. After tonight the country may be on lockdown with all events cancelled etc.(nope they haven’t decided to do this yet)

So Manchester here we come.

We had pale waves on as an introduction, supporting act. Loved their sound. So I will look for them on Spotify.

Found our seats easily as they were shown to us, We had a great view as well, super impressed.

My only bugbear was everyone stood up, we had seating for disability so thankfully on the end, so could still see, but I spotted others that couldn’t.

Set List

  1. Nightmare
  2. Castle
  3. Heaven In Hiding
  4. Eyes Closed/ Die for Me
  5. You Should Be Sad
  6. Haunting
  7. Forever… (is a Long Time)
  8. Dominic’s Interlude (interlude)
  9. I Hate Everybody
  10. Colors pt. II / Colors
  11. Walls Could Talk
  12. Bad At Love
  13. 3am
  14. Finally // Beautiful Stranger
  15. 100 Letters (acoustic)
  16. Is There Somewhere
  17. Killing Boys
  18. Hold Me Down
  19. Clementine
  20. Graveyard
  21. 929
  22. Ashley
  23. Gasoline
  24. Without Me

The whole thing went so fast, four outfit changes, moving stages, fabulous visuals and fire. It was high energy, delicate at times, emotional in others, raging and fierce, it was a whole journey she took us on.

I was thoroughly entertained from start to finish. In fact I didn’t want it to end. We had lots of Artist interaction, and talking too. Felt like it was genuine interaction, rather than staged and forced.

And now that’s me not moving for a week, we are staying in to keep our contact with others to a minimum. I cancelled my physio appointments for a month too.

61 Weeks Post #HipReplacement Physio outside

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

Racing into the weeks now, it feels after Christmas the months have absolutely flown!! I can’t quite believe it’s middle of March and nearly time for Easter Holidays.

As the horrendous storms and water have reduced, it’s been good to get outside and do some nature countryside walks. They actually seem to wear me out more than a gym controlled session.

Trying to walk straight, small steps and very very controlled so the limp isn’t there. It’s only a small amount of steps I can do like this, before waddle comes back. But I’m trying to build upon it.

It’s cold for sure, but wrapped up it’s ok, and you get to feel alive for a bit. Blow the depressive thoughts away and reset your mind.

I am very lucky to live in such a pretty place. The mud makes each step a little off camber, giving the ankles more work to hold you upright and steady, so it’s working the micro muscles we don’t usually think about. But it does fatigue me very quickly.