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‘Coming to their Ade’

Posted By HMSA Social Media Coordinator, April 18, 2018

Ade Board talks frankly about the effects of his wife and daughter’s EDS on him, as a husband:

I live with EDS, day in day out, year in year out. Living with a chronic illness means that I have to make sacrifices. I love travelling and exploring all sorts of interesting places and cultures, all over the world, but Ehlers-Danlos syndrome has affected my ability to do all that. It impacts every part of my life.
The thing is though, I don’t have EDS – my wife and daughter do! I have to watch the two people I love most deal with the pain, fatigue, dislocations and everything else that goes along with a chronic illness – I may not have EDS but it does affect me, every single day of every single week.

I’m not one to wallow in the hardships of life but I think it’s important that those of us living with someone with a hereditary disorder of connective tissue are recognised.

Our story:
Cathy and I met 14 years ago through a mutual friend. I knew Cathy had been ill and at the time had been diagnosed with Myalgic encephalopathy (ME). She had good days and bad days with most being somewhere in between. We did manage to do a bit of travelling together and we both fell in love with India. We found that a mix of activity and rest seemed to work best. We were using pacing techniques without realising what they were – we just knew it worked, most of the time.
Our lives ticked along very nicely and we moved in together, did some travelling and found that provided we were sensible about what Cathy could do in a day, then all was good. There were times when I had to step in completely and almost be Cathy’s carer, which was difficult on top of doing a full time job, but we got in to a pretty good routine and worked out ways of getting things done, or rather, what things didn’t need to be done!

In May 2006, Isobel (our daughter) arrived, kicking and screaming in to the world. She was clearly very cross about being removed from a warm, cosy space into the outside world. As it is with most babies, she let us know she was there. The birth was a hideous experience and one I would never want to repeat. I was so scared that I would lose both Cathy and Isobel. If you were to ask me my top 5 most awful experiences, the majority of them would be when Cathy was in labour – a marathon 5 day duration (Cathy was having strong contractions quite close together but they weren’t moving the baby down). At day 3 she was finally able to have the epidural. I will never forget sitting next to her whilst the anaesthetist tried 4 times to get the epidural in. I will spare the gory details but it was distressing to say the least.

What we didn’t know at that point was that Cathy had Ehlers-Danlos syndrome hypermobility type, not that it would have made any difference if we had known, it was just a case of persevering.
I was so angry with the anaesthetist at the time thinking he was incompetent for not being able to do it straight away. As it was, it was a testament to his expertise that he managed to do it at all. On a lighter note, I also think that expectant fathers should be offered Gas & Air at times like this. All the while the epidural was being put in, Cathy was constantly on the Gas & Air meaning that she was on another planet and blissfully unaware of what was going on. Once it was in I thought that would be the end of it. I then had to spend 36 hours with Cathy wired up to machines constantly checking her blood pressure and all sorts of other things – it beeped a lot! I was just sitting there waiting for the wrong kind of beep or someone to find something wrong on the monitors.

So Isobel finally arrived and she then proceeded to scream her way through her first 3 months. We noticed that having her legs in certain positions would cause her discomfort, but when we asked the GP he said that she’d had her hips tested and they were fine so there was nothing to worry about. As time moved on we noticed other little oddities with Izzie such as delayed sitting, crawling and walking. We spoke to the Health Visitor who said to not worry about it as she was going to be a tall girl and the extra length in the limbs, body etc meant it just took her a little longer.

The niggly bits and pieces became more and more apparent until it got to the stage where our GP must have thought we were either overly anxious parents or had Munchausen’s by proxy syndrome. We were no strangers to A&E with dislocated elbows, lumps the size of golf balls on her head from falling over and distressing tummy troubles where she was clearly in a lot of pain. Cathy and I had lots of conversations along the lines of ‘something’s not right, but we’re not sure what’

Just before Izzie started school we were noticing more and more things that weren’t quite right, She walked with an odd gait, she wasn’t able to run, became fatigued very easily and was in almost constant pain. Cathy was beginning to recognise the symptoms from her own child-hood, but, as Cathy was never diagnosed with anything other than a vague reference to ME, we had no idea what could be going on, we just knew it was the same.

Feeling the pressure:
I was getting to the point where I was beginning to worry about all sorts of things being wrong for Izzie. At the same time I was worrying about Cathy as the stress was taking its toll on her. I felt this overwhelming sense of responsibility that was not easy to deal with. Not only did I have the pressure of providing for my family financially, emotionally and physically, it felt like if I didn’t do it then everything would fall apart.

We had no idea what we were dealing with at that point and it was an incredibly difficult thing to stand by and watch and, as a Dad/husband/man, I wanted to fix everything, but I had no idea how to. I felt like I was standing in front of a runaway train, that was heading straight towards me and there was nothing I could do. Cathy was telling me that Izzie was worse than she had been at that age and I didn’t know what that meant. Was Izzie going to be worse and, if so, what did that even mean?

Seeking answers:
We got a referral to a paediatrician who I thought would be able to give us the answers but after three appointments we were none the wiser. He just said that she was hypermobile but that was all. We went home and Googled it to see what that meant and got the HMSA website. We read through and it was a revelation. It was as though someone was describing Cathy and Izzie in detail – everything seemed to fit!
The paediatrician dismissed the idea of Joint Hypermobility syndrome or any of the other HDCTs, but I wasn’t so sure and so bought the book “Hypermobility, Fibromyalgia and Chronic Pain”. After reading this, I was even more convinced and decided the only way we were going to find out if our suspicions were true was to see Prof. Rodney Grahame privately. It was a revelation talking to someone who totally understood. We came away with a diagnosis for Izzie (and confirmation for Cathy) of joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (and he explained the grey area that exists between the two diagnoses). I’m not sure what I felt. Relief that we finally had a diagnosis, upset that the two people I loved most had this condition. Frustrated that there was no magic pill or medical intervention that could help and most of all, worried about what the future held! This was a game changer and the future suddenly looked a lot different to how it did.

The future:
Three years on and I feel much less anxious about it all. We know much more about it and – thanks to the HMSA – how to better manage it. I still fear for the future, but that’s in my nature anyway. I wish I could take away some of the pain and difficulties they have. I’d gladly take it myself. All I can do is fight their corner by going to appointments with them and research as much as I can. Plus there are many practical ways in which I can help. However I can’t take it away and I would love to dearly. For their sake and for mine. Both Cathy and I have had to rethink ours and Isobel’s future. I guess I do feel cheated in some ways but very thankful in others. I understand now that I can’t fix it, no one can and I still struggle to get my head round this sometimes.
All illness has a wide ranging impact on family members and friends and I know I’m no different to any of them, and so I’d like to say on behalf of everyone finding themselves in this position, please don’t forget us. We are part of the story of chronic illness too and it takes its toll. We stand by you and will fight your corner and be there when you need us.

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Editor’s comment:
Relationships are a vital source of support and protection against life’s stresses and strains, but chronic conditions often have a major impact. Many partners who are carers are holding families together, enabling loved ones to get the most out of life. Often, this role is a positive one, but caring can also have a big impact on relationships, careers, and ability to work, along with your own health and well-being.

Taking on the role of carer can be particularly hard when a medical condition is hereditary, because several members of the same family may be affected. Where parents are also caring for a child who has a chronic condition they may also experience feelings of powerlessness at being unable to protect them from pain or injury, and they may have to develop different expectations about their child.

The HMSA publication, ‘Living well with an HDCT’ provides the following advice:
As you and your partner try to adjust to life with a chronic condition, you may both need to reconsider your roles within your relationship and make necessary adjustments to work and social lives, and to who does what around the home, which can take some getting used to. You may find that your condition affects how you each think of yourselves and can alter how you think of each other. Some partners describe feeling helpless and scared, uncertain as to the best ways to provide help and support. Others find themselves feeling resentful or frustrated if a joint social life has ceased or they find themselves having to help more around the house after long days at work.

Intimacy is another important part of a relationship which can suffer. Sometimes a partner may simply be too tired, or are in too much pain, to be physically intimate. It is also common for the partner of a person with an HDCT to be fearful of being intimate in case they inadvertently cause discomfort or pain. Try to discuss your concerns as a couple and consider things that may help. For example, some couples find a warm bath or gentle massage beforehand helps to aid relaxation and the use of cushions and pillows may help o make intimacy more comfortable. Planning ahead for sex may seem less romantic, but it can be necessary in order to ensure that the person who has the condition has more energy and has given their pain medications time to work..

Make time to talk to each other and be as open and honest as possible. Try not to assume you know what’s going on in your partner’s head before you start a conversation, give each other a chance to explain how you feel. Some couples find they benefit from counselling, which can help them relearn how to relate to each other post diagnosis.

It is important that partners adopting a caring role look after their own needs as well that of the person who needs you:

Take time for yourself sometimes – a change of scene can work wonders, even if it only means getting out of the house for a quick walk round the block.

Try to keep up hobbies and interests as it is good for your mental and physical health

If you feel anxious, stressed or depressed, or feel you are struggling to cope, please talk to your GP. These problems are easier to manage at an early stage and options such as counselling, or extra support services, may be available.

If you help someone with mobility problems, be careful of your joints. Your GP may be able to refer you to a physiotherapist, or arrange for an occupational therapist to give you some tips, or suggest helpful adaptions.

More information on Living well with an HDCT can be found on our website or in our print. Visit: http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…

This article was originally featured in an HMSA Journal. The Journal is an HMSA members benefit sent out twice yearly. To join the HMSA visit:
http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…


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