EDS and me….

My life with EDS….

I know I post a lot on twitter and Facebook to try and raise awareness – but I’ve decided to write down my journey, good, bad, and ugly – so thank you so much if you have taken time to read this :).

Ehlers–Danlos syndromes (EDS) are a group of genetic connective tissue disorders. Symptoms may include loose joints, joint pain, stretchy skin, and abnormal scar formation. It often takes many many years for a formal diagnosis.

As I have hEds – I have decided to list some of the weird and wonderful things that come along with it..

People with hEDS may have:

• joint hypermobility

• loose, unstable joints that dislocate easily

•joint pain and clicking joints

• extreme tiredness (fatigue)

• skin that bruises easily

• digestive problems, such as heartburn and constipation

•dizziness and an increased heart rate after standing up

• problems with internal organs, such as mitral valve prolapse or organ prolapse

• problems with bladder control (stress incontinence)

• Pregnancy complications

• Slow gut movement

There’s many more – but they are the main ones!

I was strangely diagnosed after an eye test – they found white blood cells in the back of my eye (you can get sensory problems too, eyes, ears etc) and sent me to a rheumatologist. I was 28 when I was diagnosed.

At the time, I will be honest I had never heard of it and I was slightly scared. But I carried on going on my long walks – my body would always ache after but I thought that was just from walking too far. It turns out it was the EDS. I used to come in and get straight in a shower or shabath (sit down shower haha).

It’s only when you sit back and research it, that pieces of your childhood jigsaw start to piece together & you realise you weren’t in fact an unlucky clumsy child… and then it got worse.

I was walking 6 miles a day at work, and getting progressively worse but kept going , until one day my body wouldn’t physically let me any more. I couldn’t move, my knee had displaced and I ended up in a&e. (I don’t bother going now, we have putting them back in to a fine art ha)

But it’s the inward bits that people don’t see, which is why I’m trying to share my journey with people.

The pain is constant, it is draining, but then you don’t sleep because of painsomnia. A viscous circle.

People with EDS don’t tend to absorb medication and even certain foods too well either – I have been on tramadol and had no relief. The same for morphine.

I have gut issues, I have bladder incontinence for which I get Botox (designer bladder!) and yes, I have soiled myself when I have lost control of my bottom muscles.

My partner has been an absolute godsend helping me; bathe, change,do my hair, push me in my chair, take me on days out to places I like – basically everything.

I have constant crutches and braces on, and just the other day was sat on the sofa and my shoulder just popped out. Just like that, I wasn’t even moving.

This is the difficulty of EDS because it has so many different aspects under the surface people can’t see. I’m stubborn, I won’t refer to myself as disabled, instead using the term differently abled. I understand some people don’t like this term – but it works for me.

I still try and do what I used to, just with adaptations. I have my mobility scooter which gives me more freedom (I haven’t driven my car since February this year). And I have my crutches and chair. The only problem with crutches is 1. They make you even MORE tired & 2. They risk my shoulders coming back out.

I have at least one dislocation a day, and my right knee is usually the culprit.

I have POTS – Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down.

My skin often turns into what I call corned beef skin. Mottled and just not nice to look at really – but I’m not a vain person so I just get through it with humour saying my EDS skin is back. This links in with MCAS. Mast cell activation syndrome.

Mast cell activation syndrome (MCAS) is one type of mast cell activation disorder (MCAD), and is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks – this can especially happen after bathing!

I Have bladder and gut issues, and need to sit on a towel in the passenger side of the car because once an EDS’er needs to go there’s very little warning. I’ve lost count of the number of times I have wet myself – but I’m no longer embarrassed.

I was diagnosed with a secondary condition, fibromyalgia with all of its tender points too on top of the EDS.

It’s so difficult to try and explain it to people without keeping them from their day (or two!)

But this is my story. This is my life. Some days I will be okay and have okay days. Some days I cannot get out of bed.

Sometimes my gut works properly but usually not.

Yes, I have pooed myself.

Yes, I wet myself.

Yes, I get frustrated at times that I’m not as active as I was.

But one thing I’ve come to realise is that I have it. It’s not going away… so I just crack on with whatever I can and try and keep my mindset positive.

I wet myself at least 3 times a week (I’m waiting for my next lot of Botox)

I have had an ectopic pregnancy and a miscarriage which can be both linked to EDS.

I have endometriosis which again is linked to EDS.

I have hearing problems that have been there since I was a child.

I have the archetypical VERY skinny wrists but very large hands in comparison.

I can’t control my body temperature which isn’t great, especially in a hot shower or shabath.

I have the ‘long face’ a lot of people with EDS have. In the family we are all animals and I’m the horse haha!

Yes my joints pop out regular, or even sublux (not a full dislocation).

Yes I struggle to live the life I once had, walking for fun and I miss out on so many social things because it really is one day at a time.

I can’t make concrete plans with you, because I can’t promise on that day will be okay.

My hands and feet regularly turn purple and like blocks of ice because of my poor circulation.

I love music so I still try and get to my concerts – with my partner pushing me in my wheelchair (they often don’t allow mobility scooters).

But you know what? This is my life now, and I do my hardest to do the things I could before – just adapted.

With it being connective tissue, collagen and joints, it literally affects your entire body, as your body is made up of collagen connective tissues and bones (joints). All of my ligaments are lax, joints loose and unstable, internal organs have collagen around them but not supporting them well – and that’s just a few things.

I just wanted to try and write this to keep raising awareness (and I’m sure I’ve forgotten loads, so I will keep adding to it) and not for any sympathy please. If you think this could help anybody then please feel free to show them. If you just wanted to learn more about it, then thank you from the bottom of my heart.

If you imagine being filled with concrete at the beginning of the day – that’s the best way I can describe how it feels & the pain.

There aren’t may surgeries they can do, as with the joints and ligaments being so lax to begin with, putting a false ligament or tendon in won’t strengthen the others.

I am lucky. I have my group of friends and my family. I have my partner and his two amazing children who understand completely and they are 5 and 8.

It took me a long time to realise I had to accept the changes to my life but slowly but surely I’m getting there!

Thank you once again for reading and I hope you found it informative (or boring, either or, haha)

And if you have any questions please don’t hesitate to get in touch with me, either via here or Twitter @lala_cox

Keep on keeping on zebras, and anyone else who suffers from a long term degenerative disease. You’ve got this. I promise.

Thank you again for reading. More info can be found here – https://www.ehlers-danlos.com

Lauri x

NOTE: none of the above advice is intended to substitute medical experts opinions. Please always see your doctor, specialist, PCP, or physio if you have any problems. Thank you.

Stop The World – I Want To Get Off

Stop the world, I want to get off…

It’s a funny thing, life, isn’t it? So many chapters, some short, some long, some which seem never ending. But they do end. Each and every chapter has an end.

For anyone who has read my previous blogs about mental health, they will know that I don’t hide any problems I may have had. I will openly talk about it, in the hope that one day, the stigma surrounding “imaginary” illnesses will disappear, for good.

This chapter starts somewhere in 2012, maybe early 2013. A toxic (for the pair of us) relationship, which neither of us could get out of, even though we knew that would have been best. We loved each other, but were bad for each other and got stuck in a vicious circle. I became lost. I didn’t know who I was any more.

Having had previous problems with anxiety, depression and mental health in general, it was testing at times, to say the least.

However, I don’t want to go into too much detail about that – I’m not an ex on a rant and I’m not here to bad mouth anyone… what I am here, hopefully to do, is to make people realise that there is no shame in being different. There is no shame in reaching out and asking for help. One of the strongest things you can do, is seek help.

Anyway; this is where the full story begins – in mid to late September 2013, I found out I was pregnant. I am aware many of you know I was ill, but don’t know why (I don’t tend to share a lot of things like that). I was in and out of hospital for two maybe 3 weeks, every day for invasive scans, blood tests and check ups. They couldn’t find my baby anywhere – but my body was certainly pregnant – that much they did know.

I didn’t know what to do. Isn’t the most natural thing in the world for a woman, to carry a child, protect it and give birth to it a little further down the line? I couldn’t even manage that. They eventually found my baby, it had become lodged in my fallopian tube.

They gave me two options. An injection – which is a cancer treatment to hopefully lessen the mass and pass through the body naturally – or an operation. I chose the former. I have never known pain like it, physically or mentally.

However, me being me – realised there was nothing I could do about it and I just had to get on with it. That is, until a phone call one Tuesday afternoon from the hospital – 2 weeks after my injection – asking me to come straight in to my ward – as the injection hadn’t worked.

I took myself to the hospital, and met with my nurse who gave me the options – stay in and have emergency surgery in the morning – or walk out of the hospital with a high likliehood that I would be dead, or very seriously ill within 48 hours, as it continued to grow, would burst and cause internal bleeding. I had only ever been to a&e once in my life before all of this, and here I was being told this news. I knew there was only one option really.

I had to sign consent forms, was placed on 3 or 4 drips, and prepared for my operation the next morning. It’s funny the little things you remember, as I was Nil By Mouth, and they let me have a cracker at 11pm, and I stayed up all night streaming the ashes on my phone.

Anyway; the surgery went ahead the following daw as planned – and I came round in an anaesthetic haze demanding to know where my mum was, and telling them that they had to take my catheter bag out, as I “didn’t want one of those things and needed a wee.” Despite the fact I couldn’t even walk.

I’m just telling this story briefly, as there is no need to go into too much detail around it.

I was discharged the following day, with a beautiful set of surgical stockings and some injections that had to be administered once a day. This, after the surgeon came to tell me that they couldn’t save my ovary or tube. My mum or sister had to bathe me at 25 years old. I had honestly never felt so low in my life. So degraded. And it was 3 weeks until Christmas.I constantly doubted myself, asking if I was still a woman because I only had one side left. I wasn’t a proper woman any more.

So, I asked my mum one day, if she could take me into town – I wanted to see if I could get some Christmas shopping done. The humiliation I felt, when we realised I couldn’t manage and needed a wheelchair was like nothing I have experienced before. However, we made light of it, quipping that we had a free bag carrier at least.

Christmas came, and as is tradition – I visit my dads on the evening. Only this year, I couldn’t drive – so he had to come and get me. I went up, opened my presents, ate my dinner, took my tablets and fell asleep. I felt so rude. And something which to this day I regret, as it turned out to be my grandmas final Christmas with us.

We never told her the full story of what happened, we just told her it was related to my ovary. Im glad of this, as she was my best friend and it would have broken her little heart.

So, we fast forward to February – and my first time back driving – a man writes my car off my smashing into the back of me. No big deal really, a car is a material possession and can be replaced. It just seemed I was in a bad run of luck.

Slowly, I returned to uni – staying late every Wednesday to catch up. My tutors and classmates couldn’t have been more helpful and for this I am eternally grateful. I would never have got through that year without them. (and I did, I passed with flying colours somehow!)

In time, I managed to be able to wear waistbands and jeans again, got myself a new car and some more freedom and independence. I carried on visiting my grandma every day, and taking her shopping or going on our little outings.

However, in April, whilst at uni – I got a message from my mum telling me my terminally ill nana had been put on end of life medication & to expect the worst. I came home immediately and went to see her. She passed away the following day. It was the first grandparent I had lost that I was fully able to understand – and seeing my mum so heartbroken broke my heart. The first person I went to, was my best friend, my grandma.

I wrote a poem (as I do, my release) and read it at her funeral. Then life just carried on.

Until June that is; when I got a call from grandma one Saturday morning; she had had a fall and could I go round please. When I got there, she told me that she had fallen the night before and didn’t want to bother me as she knew I was at work until 10. I immediately phoned an ambulance, phoned work and explained and was told that I would have to find cover or go in. Sorry, but no. As stated, and as you probably all know – my grandma was my best friend. We were so close, spoke every day. Ever since I was a little girl she had looked after me, and I her.

She never really came back from that – I would visit hospital every day – take her in her favourite sweets and posessions and joke around with her. Latterly, when she was moved into a care home – I visited pretty much every day. I had a 3 day holiday in Ibiza, which I was reluctant to go on but I knew she was being looked after. As soon as I got back, I went to see her and she stole my wristbands!

Then; September 6^th 2014, after I had visited her in hospital (she had been re-admitted) I was getting ready at a friend’s house for a well-deserved night out – and I got a phone call. I must go to the hospital as she had gone downhill. My world fell apart in that one phone call. My heart literally broke.

My friend, who I will not name – as I haven’t asked her permission, drove me to the hospital while I phoned my mum and dad to tell them. I phoned my other friends, who were coming out with us – and each one of them came to the hospital and sat in the family room waiting for me. I couldn’t have asked for a better group of people around me that night.

I begged her, pleaded with her, tried to make deals with her – but I knew she had given up. She wanted to leave this sphere. Sammie brought my godchildren in to say goodbye, and we left.

We returned the next day, sitting, talking to her and waiting for the inevitable.

She passed away at 8.25pm on September 7^th. She wasn’t alone. However the nurses, and my family had advised me to come home at around 7 to try and get some rest.

I will never forget that moment as long as I live. The ONE person I turned to, my little best friend, gone. I was completely and utterly gone. Apparently I even screamed.

I went back to the hospital to collect her things, give her a cuddle and a kiss and made her look smart. Odd, I know. But I had to do it. For me, and for her.

For me, given everything else in the 15 months previous – was the worst. I didn’t know what to do and I felt completely lost. My close friends worried that I would go off the rails. I didn’t.

I continued (somewhat limited) at uni, and tried to muddle through. I don’t know how on earth I managed it, but I passed my course with a merit, just one module from a distinction.

This isn’t some back story into my life, but it’s a story to others. No matter what life throws at you, and how sometimes you feel like it may last forever – it doesn’t. I suffered three of the worst things imaginable in such a short space of time and I won’t lie, it did affect me physically and mentally. But I knew I had to keep going. However, I also knew I needed help.

I now attend counselling once a week, and that isn’t something I am afraid to admit. The strongest decision I ever made, was telling people I needed help. That I wasn’t coping.

When you have been to the depths that a lot of us have, sometimes there seems to be no way out. You feel like you can’t tell anyone as “they won’t understand” or “I’m being silly” alongside a myriad of other things that run through your mind.

However, I’ve learned a lot. I still have my bad days, weeks or months. But I know to tell someone. A little text or a phone call – and I know I’m not crazy. I have learned, over the last 18 months how much I appreciate my amazing family, and who my real and true friends are.

There is so much stigma attached to mental health issues, which is why I write my blogs. There shouldn’t be. If you opened up and even asked people – I can guarantee you they are a lot more common than you think.

So, my message is this – you want to stop the world and get off? You don’t. It feels never ending, there is no hope, no light at the end of the tunnel. There is. Only, when you have been so low, can you begin to realise and appreciate even small things in life.

So many times along my journey, which in all honesty began way way before 2012 – I’ve wanted to give up. I’ve laid in bed for weeks or months on end, and I’ve had the darkest of thoughts. But I’ve fought through them all. Each time I do, it makes me realise that it only makes you stronger (without sounding cliché)

Sometimes, things just crop up – but please realise – you are never the only one – and you are never, ever alone.

Never give up. Giving up is easy. Riding it out when you think no one understands is the real courage.

 

What a difference 18 months makes.

Lauri x

ps… My other mental health blogs are here – http://apicthousandwords.blogspot.co.uk/2011/09/last-one-for-now-monster-in-my-head.html