I’m back at work!

After so many months off sick, I’m back at work!

It feels so good, even on reduced hours and a very restricted working schedule.

To have a purpose, to have something to get up for in the morning, to feel like I might make a small, tiny difference somewhere in the world by the work I do!

I have to take things really gently. My body is a ticking timebomb, with joints ready to implode/explode/disintegrate at little or no notice. So 30 minutes working, 45 minute resting for now. A ridiculous working pattern, but I’m going to build it up slowly and hopefully I’ll get to a stage where it’s comfortable/tolerable to sit for longer periods.

Work can often seem dreary, especially on Monday mornings! But when it’s taken away from you, snatched away when you’re halfway through a project, when you’re gearing your efforts towards a promotion, when you really feel as if the work you do has purpose and does some good in the world, not having that passion to get you through the day can feel almost like a bereavement.

But I do feel somewhat blessed by the time I’ve had to heal and recuperate. I’ve had time to explore new ways of finding joy – pottering in the garden, reading new books, and starting this blog! I’m immensely grateful for my employer’s safety net that has provided this security.

Now on to constant recovery and taking good care of my health everyday!

In a bind with bindweed

My mortal enemy has surfaced again – bindweed.

Every year that twisty-turny, creepy-crawly plant sprouts out of hibernation and causes havoc.

It’s exhausted me!

I have to be honest. Looking out on the garden over the past few weeks I’ve thought “what’s the point, it’s never going to look nice. I’m never going to be able to manage it.”

It’s been a bit of a dark few weeks.

But today, I donned the gardening gloves and made a start. The patio weeds have been banished and I’ve got all the pots placed in the right place.

I can sit in the warm sunshine, hear the birds and buzzing bees, feel that gently rustling breeze, smell the thriving lavender and feel a small sense of calm overtake me.

The bindweed is still there. Just over the fence.

It will get tackled slowly but surely, and I only need to persevere little by little. But for today, I need calm and quiet and to appreciate why the work is worth it.

Gardening with fatigue, fainting and non-green thumbs

If you were to ask anyone who knows me, they would put gardening a long way down my list of enjoyment activities. Probably a long way below music, or reading, or video games.

This year, I’ve resolved to try and do something a bit different, move out of my indoor comfort zone and venture into the outdoors. Gardening has never come easily to me, or my family. We’re the type of family that have had the uncanny ability to kill a houseplant with a glance and become overwhelmed by garden weeds in seconds.

Added to my genetic inability to grow plants, I also can’t:

a) stand up very long

b) hold objects very well

c) carry anything particularly heavy

d) do any of these things when it’s over 15 degrees Celsius

So you could say I’m at a disadvantage.

Not letting this dissuade me, I’ve been chipping away at the masses of winter weeds that had overgrown the garden. In my mind to keep me going, a blissful image of me relaxing with a cup of tea, light sunshine and a gentle breeze.

I’ve done a few things to help keep me stable while puttering around the garden:

1. Pace myself. Even if I feel like I could go on a bit longer, I know taking that bit of rest can only be beneficial for me. The garden isn’t going anywhere.

2. Plan goals to keep motivated. I’ve staggered out deliveries of flowers so I can pace as above, but can also plan small areas at a time. Currently it’s sunny areas. Next delivery is partially shaded areas. It also helps to see things come together, and gives a little sense of achievement gradually.

3. Get family/friends on board. For the big jobs, I needed to get family on board to help. The lawn has been particularly bad – weed ridden and grass bare. My stepdaughter helped weed, and my partner mowed. This helped save some energy!

4. Have the right tools. I’m still not there with this! Having realised I didn’t have a garden fork during the lawn process, I realise how important the right tool is. I’m using Wolf Garten interchangeable tools, with an ergonomic add-on handle set. The weed puller is a dream! And no bending!

Enough of that – here are some before and after pictures



Obviously still lots to do, but I’ve got all the time in the world. Seeing things come together is so satisfying after the chaos that it was before.

It’s my birthday tomorrow, I’m hoping there may be a couple of bits in some presents that might be gardening related! Maybe I have caught the green bug after all!

So I’m getting a pee bottle…

Quick post, as things aren’t great.

As those with hypermobility and those who know hypermobility might understand, some days/weeks/months are tougher than others.

This has been my tough week so far. The early summer (21 degrees – go UK!) has floored me with its magnificent heated-ness and I am now a sad, soggy mess if I try to move any more than a few metres. I’ve caught up on some TV, which is good!

The garden has been a little neglected, with family watering on my behalf. I did joyfully notice my peas had started growing though!

Talking about peas…

I had a visit from an occupational therapist last week (I think I mentioned it)

Tomorrow, I take delivery of my first pee bottle.

I don’t know quite how to feel about it. Kinda sad and humiliated on one hand that my body has betrayed me to the point of this aged 33…

Kind of relieved that the inevitable feeling to ‘go’ ten minutes after getting into bed can be dealt with in a different way than either clambering downstairs risking life and limb, or spending an incredibly uncomfortable night holding it in.

I get more ‘toys’ too tomorrow. I’m sure once I’m past the shock, they’ll become helpful and useful. For now, I’m suspicious and slightly aggrieved that I need them in my home.

Anyone else of an age where you can’t quite wrap your head around having additional aids around? Be great to know I’m not alone!

Medical mysteries…

In the main, I get on with my life in spite of the annoyances that get in my way almost forgetting I’m ‘disabled’. When I can’t open a jar of jam/pickles/chocolate spread and have to hand it to my partner to open. Or when I suddenly seize up midway getting out of the car and stagger randomly a few paces trying to regain some control over my wobbly body.

I’m ‘okay’ with this stuff. (Well, not ‘okay’ but I live with it. It’s not going away anytime soon, so…)

There’s the odd day that makes me face up to my disability full on.

Today was one of those days.

This morning, an occupational therapist came to have a look around the house and see if there’s anything we can do to make things a bit more manageable. Like I expected, the stairs are an issue, so we’re ordering rails left, right and centre to help with the wobbly-ness. And looking at a portable ramp to get my faithful steed (my mobility scooter!) out of the front door a bit more easily.

A few more things were difficult to hear. The bed rail? Well, I could perhaps get used to something to help me get out of bed more easily – coffee and croissants may have been nicer though!

The stuff around toileting was just, embarrassing. It shouldn’t be! We all need to pee. But thinking about pee bottles and toilet rails is so difficult to process. I guess that just brings to mind being frail, not able to manage myself in the way I want to. I’m sure I’ll either get used to it, or say it’s not for me and find a different way. No harm in trying!

After that, a very strange geneticist appointment where my hypermobility spectrum disorder diagnosis has been thrown into confusion once again, as Classical type EDS has been suggested due to my skin type. So more specialised testing to be done. Yay for being a medical mystery!

And a rather depressing phone call with occupational health which finished by recommending I was still not fit for work and there was no adjustment that could be provided until we know the full extent of the issue.


I’m trying not to think the worst. I’m hoping I will get back to work sometime!

So a pretty exhausting day!

Finished off by watering the garden in preparation for grass seeding tomorrow 🙂 little goals, little steps…

I’ll take some photos tomorrow of the progress!

Gardening weather!

Mud, soil, plants and potting have never really been my ‘thing.’ Hell, it’s enough to get myself up and about at some point in the day than contemplate being able to keep a green creature alive.

But we’ve got a fairly neglected garden that has the potential to be a little wonderful haven if only a few tweaks were made.

So this spring, I’m determined to try and do a little bit now and then to make the garden a little more sunshine friendly. I want to make a space where I can tend and make something grow, as well as somewhere that’s comfortable and safe to relax and recharge in.

The lovely people over at Gardening for the Disabled Trust have helped immensely with my desire to add a bit of calm and kindly given me a little pot of money to get me going with some plants and tools.

So far I’ve planted some garlic, peas and raspberries – all good kitchen goodies!

For a chunk of colour and fragrance, I’m about to plant some rose bushes.

There’s still a bit of planning to do, and an incredible amount of weeding. But over time I’ve learned that I must take things slowly, steadily and in a measured fashion. Otherwise it’ll probably just crumble and I’ll get frustrated at myself.

Long way to go! Small steps 🙂

An MRI on a Sunday? What next?!

Now, I love the NHS. I think it is a brilliant idea, a tremendous machine of people and processes run on a shoestring budget that manages to outperform our wildest expectations on many occasions.

On others, it can be a frustrating faceless organisation with tedious waiting times when you just want to find out what’s wrong and get on with your life. I’ve had my fair share of those times!

This was not one of those times!

In my last blog Rheumatology Ruminations, I mentioned that I’d had an X Ray and blood tests in record time following a rheumatology appointment.

The NHS surprised me again, with a phone call yesterday afternoon offering me an appointment for my MRI today (Sunday).

I jumped at the chance (as far as I can move with any momentum nowadays!).

The catch? It was at 8am. With the bus ride taking about half an hour, I was looking at needing to be up and about from 6.30ish at the very latest.

But to be honest, I’d sacrifice any weekend lie in to make things move a little quicker and pin down the problems!

Despite me being a bit of a claustrophobic person, I managed quite well in the tube, lasting 50 minutes without needing a break apart from readjusting my position for a change of scan.

And my fiancé treated me to McDonald’s breakfast after! Not bad!

The rest of the day was a bit of a wipeout spent curled up with my long hot water bottle. Caught up on Game of Thrones ready for the new season! Can’t wait, but so sad that we’ll never have the ups and downs to watch on tenterhooks after this year.

What are your wipeout day fallback plans? Be great to hear what you get up to when going out or getting up isn’t an option.