Monday, November 24, 2008

Jinxed

After a fairly miserable 10 days I went to see my GP this morning. Gastrointestinal problems are more common in people with Ehlers Danlos Syndrome than they are in the general population, thought to be because the digestive organs are supported by and partly made up of connective tissue. As is typical on a monday morning all the appointments had been taken by 8.31am but as is also typical for the practice I'm registered with they will always make sure patients are seen if it is urgent/emergent.

After a quick explanation of symptoms and a comment from my GP about my having lost weight I was on my way to the chemist to pick up the Nexium and Motilium I'd been prescribed. As ever I was struck by the need for continuity of care in GP practice, something the current government seem desperate to destroy. Simple things like my GP being able to tell I have lost weight without having to weigh me or consult records are perhaps difficult to quantify but important for patient care and I expect also important in saving time and money.

The Love Interest (TLI) was eager to know how I'd got on, and whilst we were chatting about it he started to reveal a little of his feelings about the situation. Much is made of physical symptoms but the emotional consequences of ill health have far more devastating effects, not just on the person with the condition but those around them. It is very difficult to form and/or maintain personal relationships when also dealing with a chronic condition, but it is also very difficult for those who care for us.

TLI mentioned how difficult he finds not being able to 'wave a magic wand' and make everything better, and how he is trying to think through whether he will be able to cope with that. I appreciate his honesty but I also appreciate how much he does help to make things better just by supporting me emotionally, something far more valuable than any magic wand could ever be. If anyone does have any insight into how to reassure a supportive friend/partner/family member in this kind of situation then I'd be really grateful for your thoughts.

Having got all that out of the way it's time for the unrelated scandalous gossip. Siobhan came to stay this weekend, which of course meant I was ill. Perhaps she's a jinx? The first occasion she came to stay I ended up in A&E and I have been ill on the other occasions. Despite that we had a lovely weekend together having girlie time, catching up on gossip, watching dvd's and looking at each others photos on facebook.

Like many of us Siobhan has reconnected with old school friends via facebook (it seems so much better for that than friend's reunited) Siobhan lives in a different part of the country and our different groups of friends have no connection. Or so we thought. We were looking through photos of one of the (many, many) men Siobhan is currently interested in, and there in amongst more innocuous photos of this guy's 30th birthday was Roland's girlfriend. Naughty nurse outfit and all!

I recognised her immediately and would have done so even if I had not already known she works as a stripper, but there was something really bizarre about seeing photos of her in that context. Unfortunately it's one of those awkward situations where Roland is completely besotted with this woman and without exception all his friends dislike her. No, not because of the stripping, we're far too broad minded a group to care about things like that. Roland is completely head over heels and will do anything for this woman, he sends little presents to her workplace if she's having a bad day, and practically does an enormous amount to help her out. Roland is still having a really hard time after the car accident he was in, he's unable to go back to work yet and so he's scared, depressed and unhappy. His girlfriend doesn't even seem to have noticed and I've lost count of the number of times he's cried on my shoulder. Literally.

Ironically Roland's physiotherapist has just told him she believes him to be suffering from Hypermobility Syndrome*. I suggested that some months back but I wish I had been wrong.

*Hypermobility Syndrome (HMS) is generally considered to be a milder version of the old EDS type III now called Hypermobile EDS. Some experts consider the two names to be interchangeable and that it is the same condition, others view them as distinct entities. For what it's worth my personal opinion is that they are distinct conditions. Personal experience suggests to me that HMS is very common although just as poorly recognised as EDS and is a much more benign condition than EDS. Unfortunately many of those diagnosed with HMS struggle with multi system symptoms but struggle to have that recognised because it's 'just' hypermobility a struggle which would likely be unnecessary if they had a label of EDS.

15 comments:

Rae!xx said...

Hope you are feeling better soon and I am really pleased love interest is looking after you too.

Sounds like you had a lovely weekend though..xx

Stonehead said...

The problem with Facebook is that obsessive weirdos from the past can find you far too easily. Shudder!

LceeL said...

If you need to tell him how valuable his support is to you, then maybe the best thing you can do for him is to help pull his head out of his arse.

But do tell him, so that he knows. Don't make him feel as though you are dependent on him - just let him know how much his helpfulness and support mean to you.

Trixie said...

Ahhh baby...I wish I had a magic wand too to stop you being ill. Hope you feel better soon. x

transfattyacid said...

re: reassuring loved ones.

I know it sounds glib, but why would they want to cure you?

Surely the point is they fell in love with you because of who you are.

Ok there maybe problems with having a disability, like diffuclties with having children or whatever - but in a sense it is like saying 'I wish I could wave a magic wand and give you green eyes'.

Marla said...

I hope you get feeling better soon. Intestinal problems are not easy. Hang in there.

Mr. Nighttime said...

"Much is made of physical symptoms but the emotional consequences of ill health have far more devastating effects, not just on the person with the condition but those around them. It is very difficult to form and/or maintain personal relationships when also dealing with a chronic condition, but it is also very difficult for those who care for us."

First, I hope you are feeling better soon.

Second, regarding the above, the devastation that chronic illnesses/conditions can wreak upon relationships, marriages, etc, cannot be overstated. In my own experience in the transplant community, divorce rates can be higher than the national average. Both the patient and the caregiver go through unique, individual experiences, and it is not always possible for each to understand the POV of the other, or even to empathize with the other person, as each of their experiences can be so overwhelming. I don't know that Mrs. Nighttime and I have ever fully recovered from my transplant experience, and the 3 bouts of marriage counseling are proof positive of that.

"I appreciate his honesty but I also appreciate how much he does help to make things better just by supporting me emotionally, something far more valuable than any magic wand could ever be. If anyone does have any insight into how to reassure a supportive friend/partner/family member in this kind of situation then I'd be really grateful for your thoughts."

One of the best things that can be done is education. If TLI has little to no knowledge of EDS, involve them in what you know about the disease. It can help them to gain some degree of insight as to why certain things will happen to you, and how to deal with them when they do, so he won't feel so helpless.

The other thing to do is to meet with other caregivers/SO's of EDS patients, to share thoughts, feelings, experiences, etc. This can go a long way in trying to get a grip on how to deal with his situation, and how to best be supportive.

steph said...

Bendy

Sorry to hear you've been struggling with gastrointestinal problems...again!

Yet another one of the hidden 'joys' of EDS.

I've prolapsed just about everything that can be prolapsed at this stage and have frequent intestinal problems. In fact as I write this, I'm fasting for another gastroscopy today to check out a gastric ulcer.

I see you've been prescribed Nexium. A wee warning... following my last gastroscopy I was started on Nexium 40mg twice daily but I couldn't tolerate it as it caused increasing intestinal motility (diarrhoea) over the following 4-5 days. I thought my GP would advise a reduced dose but he stopped it completely and changed me over to Zoton 30mg once daily which seems to works a treat. Hopefully today's scope will prove him right.

So don't put up with any shit (hehe) from Nexium!

Hope you feel better soon (((hugs)))

Mary said...

So far as magic wands go - yes, I know that Steve felt much the same when we got together. He hated to see someone he loves in pain, and he hated to feel powerless to do anything about it. Understandable.

We had a bit of a phase where every time I fell over he wanted to DO THINGS - fetch cushions and blankets and a drink and a straw and stuff tablets into me and take my shoes off and put me to bed and run me a bath and god knows what else. It took a while for him to adjust to the idea that while that's a reasonable response to someone who doesn't fall over every day and know how to deal with it themselves, I was a different kettle of fish.

It's still very much a work in progress but he is getting the idea that we are looking at making my life better, rather than making me better. The focus needs to shift away from ZOMG pain! injury! panic!

If I may yet again reference my Gorilla post, people around us need to realise that they will only waste their time and energy if they try to fight against the gorilla - they might even make it angrier - and that the 'magic wand' that will improve our quality of life is to accept it, accommodate it, and endeavour to create the most enjoyable life possible while taking the gorilla's presence and needs into account.

having my cake said...

Have you tried bioacidofolous? It's the stuff that's in those pro-biotic drinks but without all the dairy and sugar. You can buy it as a powder or in capsules from most health food shops. I found it really helped with my digestive problems and, once Id got the dose right, had no unpleasant side effects. Just a suggestion x

Ms Ordinarée said...

Honey, If I had the answer to this particular q then I would be a well rounded wife...( I'm rounded now but boobs don't count in this discussion). What Imean is that over the last 13+ years MysteriousG and I have been together, he has seen me go from an accident prone yet otherwise (thought to be) ok Nursey girl with a weird hip which came out all the time during sex - to a multiple joint multiple times a day dislocator with paral ..w/chair etc...not to mention the pain,yadda yadda....
The positive thing is we are still together so somewhere . somehow we must be 'coasting' along. I would say talk, but you know what G and I don;t talk about me and my situ very often at all...but thats best since he practically faints at the thought of the dislocations... I guess even tho I am how I now am, Iam still how I was in my head and heart and I still feel and act like the nurturer...yes that causes its own set of conflicts and u perhaps know how frustrated etc etc I get..and he gets..

Incidently, gs said many times that line "he wants to wave a wand and make me ok" and varying words to that effect...I take it as a Protector type comment rather than a non acceptance comment...but thats me..

Apologies for my bad typing, having bad eve,(details in my reply to your comment),

I hope that you are starting to feel bertter? We keep getting the gastro thing ( ok I still have it..lol) and coughs etc, May have to take Lil Man drs again, never mind me...)

I hope you are snuggled up away fromthe cold...bbbrrrrrrrr
Love n hugs

Ms O

xoxox

Samantha said...

When I was finally dianosed as having depression, plus all the extras that come with it, my then bf was exactly the same. He felt bad because he couldn't make it all go away for me. After explaining what he could do for me, to make things a bit easier (like taking over some of the housework to lower my stress), he felt he was 'contributing' to making my life better.

gemmak said...

Excellent post, the bit about the impact on a relationship and the difficulties involved emotionally was particularly insightful. Sadly many don't realise how hard it can be on the supporting partner, myself included many years back, the result, I lost my husband of 15 years. He never did give me explanation but I am sure that caring for me took it's toll and I was so wrapped up in my own difficulties I just couldn't see it. Maybe merely the fact that you are aware and can discuss it together is the best way forward, like all situations, honest communication can only be a good thing and an understanding of both sides, by both parties I think gives you the best chance going :o)

Born Today said...

Um, bendy, for those of us who worry- could you show a sign of life?

A smile?

Even a wave?

Just to put our minds at ease...

Ms Ordinarée said...

FOR ALL WORRIED RE BENDY - I spoke to her today and she is ok - just struggling to find time to blog as much. Difficult to find energy to spread about something many of us relate to.

Bendy-was great talking earlier. I said just in comments on my blog that I forgot to enquire/tell you about a few things! will HAVE to catch up now for definite!

Love n hugs


Ms O

xox