Appointments again, and when minor victories feel like winning the lottery!!

…..Although I wouldn’t say no to the lottery win!!!

Firstly I want to apologise that this post is a couple of days later than I normally post, and also if I ramble but I have a few things that I hope you will share with me!!!  The reason that it is late is because last week was an extremely hard one for me, the appointments came to a crescendo with 5 all in the last half of the week. I couldn’t really pace; my anxiety, brain fog, fatigue and pain levels were all so bad and I only just coped. It’s not a week I want to, or could repeat often (if ever) again.  I really don’t want to bore you with all the appointments in detail, and I seriously haven’t got enough space to fill with all that, but will fill you in with the main bits (to follow-up previous posts) and then explain my minor victory.  My victory actually wasn’t one of this week’s appointments, and in true CraftyInsomniac style hasn’t gone smoothly but is slowly getting sorted so I can now discuss it!

Well last week I had Orthotics and finally got replacements for my awful ankle splints which were practically falling apart.  I am lucky at my small local hospital as both Orthotists I’ve had have been so kind and helpful.  The new splints are better in so many ways, including when parts of them wear out I can actually replace just those bits instead of the whole things and also are more adjustable for when my ankles swell……what do you think??


I had hand therapy too, which was good in some ways!  Turns out my knuckle is caving in, it’s falling down and my ligaments are so lax with my Ehlers-Danlos that they cannot hold them.  It didn’t show up on the x-rays because it is still there and when supported it doesn’t cave in!  I came away with lots of splints, both on order and given to me.  The sad thing is that this was a one off appointment, the woman who saw me isn’t a hand therapist and was doing a one off appointment to pick up some of the people who, like me, needed to see someone.  She is able to follow-up with me, but until the situation is sorted in my area there are no hand therapists and so I would have to go out of area to get any further treatment.  But for now I was really happy that she had an answer, she even managed to make me a splint for my falling knuckle.  Now I have to say that it’s going to need tweaking, it isn’t big enough and I keep having to fiddle with it.  I’m not sure how we’re going to accomplish that because it’s made from thermoplastic and I don’t know when, or if I’m going to be able to see her again.  But this is what she came up with………

 (My hoard of just wrist splints)

 And can you believe just from that small piece of plastic I’ve had very big results, my handwriting has gone from this without the splint…….


To this with…………

I’m amazed. I still can’t do lots as it still hurts after a bit but I’m so looking forward to being able to colour again. I’ve got some amazing pencils that a friend bought me that I’ve not been able to use.  As soon as my Christmas bits are sorted I’m getting my colouring books back out and am going to do some.  Hopefully once I get it sorted properly it will be really helpful (well considering it’s helpful already and isn’t exactly right yet!)

Now I have got to see a haematologist because of issues that showed up in my MRI of my knee’s and follow-up blood tests, but although I may well fill you in later on that I want to share my minor victory with you.  So what is it?  A catheter.  OK so to most people, and even to me years ago, a catheter is not a victory; it’s something to dread.  But for me and all the problems that I’ve had with the unspeakable problem I’m so relieved.  The urologist was brilliant, he acknowledged  the reasoning behind my decision and thought that I’d made the best decision for me.  Because I’ve not had a full time catheter before he wants me to try an indwelling, or urethral catheter for a couple of months first; mainly because it’s a general anaesthetic and surgery for a supra-pubic catheter he wants to make sure that I’m definitely going to benefit from it.  This is where it unravels just a small amount (it seriously wouldn’t be me if it didn’t, nothing ever goes smoothly with me) because the first phone conversation with the catheter nurses didn’t go well.  However the second one, after intervention from my doctor, did and all being well I will have a catheter from Friday.  I wouldn’t be honest if I didn’t say that although this is a victory and I’ve researched it fully that I wasn’t still apprehensive.  I am however going into this with the thought that I am just trying it out, if it doesn’t work I’ve not lost anything but I’m hoping to get a bit of my life back. To be able to go out without having to come back to get changed after an hour will be amazing, I just hope I can cope with this bit to try it out! I hope that my sensory processing issues and my body itself will cope with everything. I will, of course, keep you updated.  I hope that by keep sharing I can help others like me, in this situation, feel less alone.

I am going to end on Christmas.  With my splints help most of my Christmas cards are now written and I’ve started making my tags too.  I might share some of my mum’s amazing decorations in another post because she’s still going at the moment, but for now my tags are started, cards are being written and I’m still desperately trying to find where my Christmas spirit has disappeared to!! I hope it will come back now I’ve mainly finished my appointments (got another this week and a haematology one to wait for) and now I’m starting to complete more Christmas activities.  Have you got loads of Christmas spirit or are you, like me, struggling this year?  What bits have you done for Christmas so far?  Also have any of you any tips for catheters to share, with me and others who may be getting used to them?  Let me know in the comments below, for now I hope that you are getting ready for Christmas.

This is how I do my little jobs like tags and cards, in front of the TV of course too!!

13 thoughts on “Appointments again, and when minor victories feel like winning the lottery!!

  1. EDS is such a difficult condition to cope with but you sound really positive which is just great. So pleased that you are getting positive options from your medical team. Sometimes being ill is so consuming with medical appointments that it can be difficult to see how it’s helping! Love that you have so much Christmas spirit!!

  2. Congratulations on your victory, I know it might not seem like much to some but to you it’s important and that’s great. Your tags look beautiful and you have lovely hand-writing! My Christmas spirit comes in waves, I do Christmassy things and I’m all festive then all of a sudden I get knocked and I hit rock bottom due to personal demons but hopefully the closer I get to Christmas the Christmas spirit will stick! Lovely post!

  3. First of all, many congratulations on your victory. I am even so glad to see that you are getting positive response and help from your doctors. Many people in this world need only this little positive spirit to live their life happily but do not find a ray of hope or even the slightest courage to do so. You are such an inspiration and I am so happy to see your progress. Keep inspiring and spreading positive vibes. Merry Xmas 🙂

  4. I’m so pleased for you! Small victories lead to happier and helpful times and I’m so glad you’re able to maybe do things a little better than before. Those tags are really cute btw, hope you have the most amazing Christmas xx

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