Last Saturday was an amazing day. Lucia and her dance troupe took part in another festival (click here for details on the last one) and she was so excited! She woke early (especially for a Saturday) and just couldn’t wait to get to the venue, to see her friends, get her costume on and to dance on stage. Now that she had experienced it once before and knew what to expect she was raring to go – this time with absolutely no nerves at all!
She danced beautifully along with the rest of the group, full of confidence, smiles and grace – and they won! As you can imagine we were all beaming seeing her up there on stage, playing her part and doing her thing – just like all the other girls – and, most importantly, absolutely loving it. The gold medal was the icing on the cake!
Showing her gold medal with pride!
As mentioned in the last post, we allow Lucia to do the routine in her bare legs (without compression) as it is only for a short period. She does however wear her ballet shoes to protect her feet while all the other girls are in bare feet.
But Saturday taught me a very valuable lesson. I think I took my eye off the ‘Lymphoedema ball’ and Lucia paid for it on Sunday.
Details about the day
The show was at 2pm. We arrived at noon as the teacher wanted to do a few practice runs on the stage with the group as they are all aged seven and under (babies!). I kept Lucia’s compression garments on for the practice and then everyone started to get ready. The changing area in this particular venue was tiny – and when you had over 20 girls and their mums all trying to get changed, make up sorted and bags sitting everywhere, there wasn’t even elbow room.
I managed to find a chair and a little bit of space for a few minutes to get Lucia’s compression tights hauled off her, as unless she is either sitting back or lying down there is no other way I can get them off. I then quickly got her changed into her costume as I didn’t want to be taking up too much room for too long.
In hindsight, I took the garments off too early – they could have stayed on at least another 15 to 20 minutes, but because everyone else was ready I didn’t want to be rushing Lucia at the last minute – plus, anyone with experience of compression garments knows there is absolutely no chance they can be rushed anyway.
I did put her toe caps back on for another 10 minutes or so while we were waiting around, but as it came to 1.30pm some of the girls seemed to be disappearing. Thinking they were heading to the stage area I took off Lucia’s toe caps and popped on her tighter ballet shoe – once again to ensure she was ready along with everyone else. In hindsight, I did this too early as well.
The three ballet shoes
FYI – Lucia has 3 ballet shoes – one for her left foot (size 10) and two for her right foot (size 11). She has two for her right foot because when she is wearing her compression garments and toe caps she needs a shoe with looser elastic to accommodate the compression as well as her swelling. I customised a ballet shoe with new elastic to fit. Then she has a ballet shoe with the normal, unadjusted elastic, just for festival performances, as when she has no compression on the adjusted elastic is too loose. (Hope this makes sense.)
Adjusted ballet shoe elastic
However, the ‘normal’ elastic really is too tight for the swelling on her little foot (we need something in between the two) and on Saturday she had it on for about an hour or slightly more all in. When she had finished dancing and received her medal, I took her ballet shoe off and the swelling on her foot was in the exact shape of the ballet shoe where it had been digging into her. It wasn’t sore thankfully but it looked like it was.
The mistake
And then I made the biggest error of all. We were back in the tiny changing area and getting compression on when I am at home, with plenty of room and lots of time is tough enough never mind in a confined space surrounded by other people.
I had brought a regular pair of tights with me so I put them on under her leggings just to get us out. In my head I had planned to put her compression back on when we got to the car – but I didn’t. I thought, it’ll be ok.
So off we went for a lovely family meal and although it was in the back of my head I didn’t really worry too much. I think we were just too hyped up after the amazing performance and enjoying precious time with family.
We then had cousins coming for a sleep over that night so once again there wasn’t really time to think about it at home. When I took off her regular tights I could see her swelling wasn’t great, but she was having so much fun I just let her be.
Consequnces
Yesterday morning however told a tale. Her little foot was so very swollen and full of fluid. It looked so tight – like it might burst – and had a ‘mottled’ sort of pattern on the top of it. Her ankle was swollen and her leg too, more than normal. So obviously my worries kicked in a little.
A long day with little compression had clearly taken its toll. And then possibly just the events of day including her adrenalin running for the performance, not drinking enough throughout the day, not eating the best and staying up later than normal meant her little body was struggling to cope and she was really very inflamed. Does this sound right? Or am I just making it up to try and explain things?
Recovery
So yesterday was a Netflix day. Lucia pretty much sat on the sofa with her legs elevated all day. I got her garments on early and got her legs up. I did some extra treatment with the Physio Touch machine as well to try and bring the swelling down a bit and made her drink lots of water.
This morning (Monday) her foot and ankle were still not in great shape – though to be honest, over the last few weeks I do believe her swelling has been worse than normal, but I suppose this weekend didn’t help.
Emotions
As you can imagine I have been feeling anxious and annoyed at myself for slipping up a bit – it was a stupid decision and it has been playing on my mind a fair bit. But I am trying not to let my head run away with this too much. Once upon a time I would have really given myself a hard time until I nearly made myself sick, but I am learning to control this a little bit better. Yes, I am really frustrated at myself for not just taking the time to put her garments back on in the first place – it was foolish and I really regret it – but I am trying to see it as a learning moment so I don’t send myself mad. Plus, it was a one-off day. And it was a day when Lucia was ecstatically happy and had the most fun which is hugely important and helps put things in perspective.
I did very quickly put measures into place to try and get things back under control again as well as chatting to Lynne for advice considering her swelling hasn’t been too good lately anyway. I just hope all our usual daily treatments and extra efforts will get us back to a better place with her swelling soon.
Everyday is a school day when it comes to Lymphoedema – and, as always, any advice is welcome.
Me and my girl
Hi Jo-Ann, oh my, Lucia is the prettiest ballerina ever! Thank you for sharing her special day with us, and the trials and tribulations on lymphoedema. All I can say (as a mother of a boy with special needs), is, you are an outstanding mother and do your absolute best (and beyond) for caring for your kids. I won’t give any advice. You are the expert here. Take it one day at a time and learn along the way. I have new struggles with my son everyday – never a dull moment. The learning curve will eventually level out. Bless y’all xxxooo Clare
Hi Clare, what a lovely comment. Thank you so much for the kind words…for me there is no greater compliment to receive than to be told I am a good mum…Max and Lucia are my pride and joy. Totally agree with taking things one day at a time – that is probably the best advice there is. I used to worry constantly about the past, present and future so now I try and employ the one day at a time approach – and some days will be easier than others. I have no doubt your son gets all the love, support and care he needs from you. As you say, never a dull moment and important to learn as we go along. Thanks again for taking the time to comment and be so kind. Take care xoxo
She had a ball, don’t beat yourself up
She did have a ball and that was the most important thing that day so I am looking at this as another learning experience!x
I have a 17 year old daughter with lymphedema and also a 22 year old son with type 1 diabetes, to say to have beat myself up over the years over my “mistakes” is the understatement of the century. But as the years have passed I’ve learned to go easier on myself, motherhood is the hardest job there is and these extra challenges we have with our special kids makes it all that much harder. You’ve got this, you rock.. don’t ever beat yourself up.
HI Jennifer, thanks for your comment – us mums do like to beat ourselves up don’t we. We do need to learn to just accept the way things happen some times and move on, which is a lot easier said than done I suppose. But I am trying! My two are 9 and 6 now and time is just flying by. Thank you for such kind words, they really do mean a lot. I hope you, your son and daughter are well x
Hi Jo-Ann, I couldn’t be prouder of you if you were my own daughter, you are an amazing Mum to Max and Lucia. Don’t ever beat yourself up over the little things when you are managing the big things so well. Xx
Aw Ruby, thanks so much for this wee comment. Such a lovely thing to say. So kind xx
What is a physio touch machine?
Hi Michelle, the physio touch is a negative pressure machine that we use on Lucia to try and move the fluid. I did a post on it here if you want to take a look. You can also find out more info on this website Hope this helps.
Well done to Lucia and her ballet friends, fantastic achievement.
I wouldn’t beat yourself up too much over the rest of it. We all have good days and bad days with our Lymphoedema. Even if you had put her compression back on, her leg may still have been swollen. She was having fun and wasn’t suffering so all is good. A day chilling out with legs elevated is just what’s needed sometimes too. It’s so freeing to have bare legs every now and then, consequences or not.
Didn’t they all do so well! You are totally right Lyn, there are definitely some days that are better than others with this condition and she did have a wonderful day. It’s not often she doesn’t wear her garments and she is so so good about it all…but she does love a day where she doesn’t wear them and normally that would only ever be at home. She actually says the same as you – she likes it when her legs are ‘free’. Thanks for the lovely comment. I hope you are well 🙂