EDS Awareness: Coming to terms with chronic pain

As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to Barcelona to celebrate my and my husband's 50th birthdays (wtf?!). His was in April and mine is on 6th June (666... really rather fitting.)
I wasn't sure how I would manage it, given the uncertainties of my Ehlers-Danlos syndrome, but we had booked assistance at the airport and the train station and I took my own wheelchair.
The weather was perfect for me, warm, but not too hot for walking/wheeling around the very accessible city, visiting the wonderful architectural sights of Gaudi, including the incomparable Sagrada Famiglia, the stunning mosaic quirkiness of Park Güell and the stirring originality of La Pedrera and Casa Battló. It made my heart sing and I felt so alive and joyful to be there.

At Gaudi's Park Güell

Because of the limitations that Ehlers-Danlos syndrome places upon me, I had carefully planned the trip to include rest times, using taxis to get around so as not to use precious energy on getting between destinations. Slow walking with a stick, lots of breaks to watch the people go by and an afternoon rest while my husband visited the Picasso Museum were all factored in. Still, by the last day, I was exhausted and had to take to my wheelchair with the planned visit to Montjuïc being left for a future visit.
It's not how I used to go on holiday pre-illness but, after four years, I feel I have come to terms with structuring my life around it.

ACCOMMODATING EHLERS-DANLOS

It took more than two years to come to the realisation that this is how my life now is, restricted, stilted by fatigue and, if I forget to take my pain meds, in agonising pain. I had to decide if I was going to be angry that this had happened, or to accommodate it as an unwelcome guest, planning your life around their convenience.
At the same time, the years were inexorably moving forward, my children would soon both be adults and no longer so reliant on me. And, as I began staring down the barrel of 50, I have had to decide what kind of life I wanted to have, given what I was physically able to do.
I have seen any number of YouTube and Instagram videos of young women with EDS talking or complaining about their conditions; they're hard to watch and I'm grateful that my own illness didn't blow up until much later in life. Although I was always plagued by various bodily pains, digestive problems, dizziness and so on, I had no diagnosis and I wasn't a regular joint dislocator. I just got on with it. I was lucky.

But coming on, as it did, just after I was getting back into working after caring full time for my autistic sons was a huge blow. Realising it was here to stay plunged me into depression, always something that has clung to my event horizon, never quite able to escape completely.

A VICIOUS CIRCLE

One of the problems with EDS is that it can become a vicious circle of debilitation. You are tired and faint and in pain so you don't - can't - move about much. As a result, your body becomes weaker and "deconditioned". It is the cruel partner of any chronic illness.
At my age, this was even more of a danger that had become my reality. Going anywhere took extreme effort and the payback was several days in bed just to get back to the usual poor state.
It was going on the RNOH Stanmore Hypermobility Rehab course that gave me the confidence to start to try to push myself a little bit more. Armed with skills for pacing (that came in very useful in Barcelona) I began to look at my work schedule to try to ensure that I had energy for both the things I wanted to do and the things, like caring for my boys, that I needed to do.

Serendipitously, I found a fitness expert who now also has a diagnosis of EDS. She puts me through weekly (or so) gentle one2one Pilates using a Reformer and, over time, my strength has built up to a level where I can go to a meeting in London and take a bus from the train station, if there is a stop within a few metres of my destination. It's a big money saver from always needing a taxi, although it does exact a greater physical toll. Of course private Pilates is a financial investment that not everyone can afford. Once again, I'm lucky.
Taking up mindful meditation, stopping eating meat and developing a keener understanding of myself, via my own autism diagnosis, have all helped. It's important to do my best to ensure that I, and not Ehlers-Danlos, am in control of my future.

FIFTY PLUS

Although my caring duties are far from over, I have reached a point where they are not as all-consuming as they once were. In theory, I have more time to find or create work and earn money.
Luckily, again, over these years, I have developed my special needs website, worked as a volunteer and honed my skills as a social media specialist for social good. Mostly from my bed. But is this what I want to do for the next 20 years?
50 is nothing to be afraid of; it is a time, for many, of new freedom from parental duties if you've had your children by your early 30s.
But of course, Ehlers-Danlos doesn't like to release its grip quite so easily. Just because I've reached a turning point in age and mental strength doesn't mean it's going to pack its bags and bugger off. I may have learned to accommodate its threatening ever-presence, but I am mindful that it is always a precarious balancing act. One missed or too-late dose of pain meds, too little movement because I'm not feeling well, eating something my EDS digestive system doesn't like or just doing too much (what is too much varies daily), can destroy the delicate equilibrium I have acquired. Even emotional upset or stress can tip the scales into a flare up.
But I never forget that despite all these challenges, I am lucky to be where I am right now. Ehlers-Danlos syndrome is a greedy bastard. It knows that no matter how hard you work to regain strength, one slip and it will have you back in its painful embrace.

READ MY OTHER POSTS ON EHLERS-DANLOS SYNDROME

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The Hydrafacial: an easy way to beautiful skin

When you have a chronic illness, everyday life can seem like walking head-on into a hurricane. Putting one foot in front of the other, both physically and metaphorically, can seem like you are up against an unseen but powerful opposing force that, with one unwise step, will whip you off your feet into a maelstrom with an unknown ending. It's an uncertain and exhausting existence.

That's why having nice things happen can mean far more than you might ordinarily expect. It lifts your spirits and reminds you that the sun's warmth can still reach you. You remember that you are still a woman first, not just a patient or a carer or a parent.

That's especially true when it's something as delicious as a facial. And not just any facial, but the treatment that's sought after by A-list celebrities: The Hydrafacial.

When Miss Sherina Balaratnam of the state-of-the-art S-Thetics clinic in Beaconsfield, asked me if I'd like to try out the Hydrafacial for myself, it was just the thing to help prepare me for a challenging three-day conference that was coming up. In fact, just being in the clinic, with its all-white decor and hi-tec clinical equipment, makes you feel like you're about to experience something really special as Sherina and her team make you feel so welcome and at ease.

I've been lucky enough to test several other treatments at S-Thetics, the Fire and Ice treatment, Juvéderm fillers and my absolute favourite, the EndyMed 3DEEP, none of which I would have been able to do without Sherina's generosity in exchange for an honest review. And from the description of the Hydrafacial as a six-step, personalised, pore-deep treatment, I knew my tired-feeling skin was in for a treat.

Sherina even sent me on my way with a divine bottle of Copper Mist firming mist, to keep my skin happy and hydrated.

Sherina's Copper Firming Mist gift from iS Clinic

The Hydrafacial

The Hydrafacial can be tailored to match whatever needs your skin may have, and this can be analysed first with S-Thetics' Visia which analyses the state of your skin deep into the dermis. I already knew from a previous Visia that I have sun damage from being fair-skinned and the signs of ageing you would expect. Sherina selected the Hydrafacial Skin Health for Life treatment which, which detoxes, exfoliates, brightens, extracts impurities and then treats the skin with pure botanicals to rejuvenate, plump and firm.

You can buy the same serums that the Hydrafacial uses separately

The Hydrafacial uses a multi-functional wand, attached to a machine that pumps through the right serum for each stage of treatment. The wand has different heads according to the job it's doing, from exfoliating dead skin cells, to extracting deep down dirt from the pores to delivering the soothing and firming serums, hyaluronic acid and peptides to leave you looking your best.

The Hydrafacial kind of reminds me of when I first got a Dyson vacuum cleaner. I thought my carpet was clean until I used the Dyson. It sucked out deep down fine silt that other cleaners hadn't touched. The Hydrafacial is a similar premise: you might think your skin is clean, but wait until you see what clean really looks like. It means your face looks fresh, more youthful (if that's what you need) and with any skin troubles greatly improved.

Rather than just tell you about the treatment, I made a short video with everything you need to know. And I just know you'll want to try it out yourself.

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Not ready for wrinkles: My facial rejuvenation with Juvéderm CosmeticFillers

The years zip by so quickly, especially when you have children. You're naturally more focused on them especially, as in my case, when they have special needs.

Throughout my 30s, it was just head down, full-on searching for the right help and the right school as well as dealing with their difficulties.

Then, in my mid-forties, just as I was starting to get more time to start working part-time (besides founding Special Needs Jungle), I was knocked down by a huge and lasting flare up of Ehlers Danlos syndrome. It was prompted by hormonal changes and regrettably throwing myself into a new work challenge on top of everything else. My body ended up in a state of collapse. Since then, I've lived in pretty much constant pain, with limited mobility and that definitely takes its toll.

I remember catching a glimpse of myself in the mirror one day; it took a second before I realised it was me, worn out with dark shadows under my eyes. I looked again, a little closer, noticing the lines on the forehead, around the eyes and from nose to mouth that seemed to have appeared or become more pronounced in a short space of time. I tried to shrug it off, after all, I was getting older and lucky to be so, having lost dear friends to cancer in recent years.

But still...I didn't feel ready for wrinkles.

Sherina explaining my skin analysis

Soon after this, almost as if the universe was watching, the BritMums Blogging team put a call out for someone prepared to have a consultation about Juvéderm® cosmetic fillers and in exchange, to write about it. Well,  I didn't need asking twice - this might just be the pick-me-up I was looking for!

As we grow older, our skin loses moisture and elasticity and begins to show the signs of ageing. You've probably heard of hyaluronic acid; it is often called the "fountain of youth" and can be found in moisturisers, serums and is also used medically to improve joint disorders, so it's a safe substance.

Juvéderm® by Allergan, make injectable fillers using hyaluronic acid and say it's the only way to replenish the hyaluronic acid deep within skin. Juvéderm® says it was developed to be smoother than most hyaluronic acid dermal-filler treatments. This makes it easy to inject and gives the face a very natural look and feel once it’s in the skin.

I've had facials before of course, even had a facial with acupuncture, but I didn't know much about cosmetic fillers. However, thanks to Britmums, Allergan and Miss Sherina Balaratnam at S-Thetics in Beaconsfield, Buckinghamshire, I decided to take the opportunity to find out, up close and personal...

It's fair to say I'm pretty thrilled with the results. Several people have said how well I'm looking and one medic I saw at an appointment had to do a double take at my age on the form when I saw her. Now that's a result, I'd say!

If my video has started you thinking that perhaps it might be something you would consider, then these links will be of use:

• Juvéderm® UK: http://www.juvederm.co.uk/
• S-Thetics clinic and Miss Sherina Balaratnam: http://sthetics.co.uk/

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Home Truths

There's no one like your kids to keep your feet on the ground. The other day, I was sitting in front of the mirror in my room, touching up my make-up before going out. My 9 year old son, who has Asperger's, was sitting on the bed.
I pulled my hair back from my face and looked in the mirror as a little voice floated across the room.
"Mummy, don't wear your hair back like that. It makes you look really old."
I turned to look at him, "That's charming," I said.
"No, I'm not kidding, it does make you look old. It's better to have it covering your face. Really."
I said nothing, for what was there to say to that? But he wasn't done.
"Sorry, to say it Mummy, but it's better you know."
"Thank you." I replied, finally.
"You're welcome," he said, happily hopping off my bed, "but don't worry. You still look nice even though you're not young anymore."
And with that, he disappeared, leaving me peering anxiously at my reflection and considering perhaps putting a bag over my head before I left the room.

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