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.