Hi everyone, that is us home from our first holiday since Rachael’s diagnosis. It actually went better than we thought it would. Rachael had a few wee break downs, mainly being a teenage girl and caring about her appearence she got upset when she could not manage to do her hair the way she wanted as her hands were numb, she could not wear her wedges as her calf muscle was going into spasm and her knees were giving way so the dresses she brought with her had to be worn with flat sandles (that we had to buy to try and support her foot which started flicking out while walking, so they were not very fashionable). But she is very resiliant, she cried for a few minutes, told me she hated her life and curled up on my knee like a toddler again (which broke my heart), but I stealed myself and said we would learn to deal with things and that she looked beautiful no matter what, I tried to help with her hair and make up but apparently I know nothing about that kind of thing, she took a deep breath and just got on with it and tied her hair back in a bobble, put her pretty dresses on and flat sandles and out we went. On one day in particular her leg was really causing her problems, she felt she was going to fall so I nipped into the chemist and bought her a bog standard stick to help her and she had a massive melt down, stomped back to hotel walking better than she had and stayed in huff for an hour before apologising. I explained the stick was there if she needed it and not to use it if she didn’t. She didn’t until coming home and used it at the airport and found it actually helped and got us through security very quickly as they just pulled us to the front of the queue (she was mortified but secretly pleased). Now that all sounds like a terrible time but in fact that was only a few minutes out of the whole week, she had only 2 days of rest and the rest of the time she was raring to go, we walked for a short period, stopped for drinks and rest along the way, went sightseeing and shopping and had what we all say is our best holiday ever. She is now in bed and I expect she will stay there till the weekend and she deserves to as she did so well with all the changes to her life. Love, love, love Italy. Would highly recommend it. Linda x
Hi Linda. Lovely to hear from you. You did it again- managed to get me all emotional, but this time, it was from pure relief and happiness that Rachael had coped so well with her holiday. Best wishes xx
Welcome home Linda & Rebecca! Another milestone passed & managed beautifully. JBK x
Hi Jellybellykelly, this is kind of freaky but Rachael is my daughter’s name but when she was born I gave my older daughter a choice of names to pick and let her pick her favourite. She chose Rebecca, so Rachael was actually called Rebecca for the first week of her life then we decided she did not look like a Rebecca so decided on Rachael instead. All her It’s A Girl card say welcome Rebecca. Linda x
Hi Linda, I’m so pleased to hear you had a good time
I bought myself some “hotter” shoes and moaned like hell that they were the least “hot” shoes I’ve ever owned… but as the weeks passed I founf myself starting to like the comfort factor and they’re lighweight, despite my initial dislike I now own 3 pairs and have already selected my winter shoes. They are not too cheap but they send lots of offers etc. Have a look and if you want to order PM your address & email and I’ll fill in the friend recommendation, I think they give a 10% off and free shipping type deal
Now, for something far more likely to appeal to Rachel as you mentioned make-up I use Bare Essential mineral powder make-up and and have found it to be a bit of a blessing to use when I have tremors/wobbles - once you get the knack of it, you don’t really need a mirror for a lot of it! I’ll check what my step daughter uses now as she uses a range she gets online as it’s cheaper and they send samples etc. With mineral make up a lot of it looks quite natural and it’s kind to your skin.
Sorry to waffle, I just hope the make-up might be something she’d like - me, 2 of my sisters and my step-daughter use it so that’s 43, 38, 24 & 21, oh and my Mum uses it too sometimes.
I can imagine her frustration at not being able to wear what she wants etc. I’m such a grown-up about it that I have ebayed a grand total of 2 pairs of shoes… neither of which I had ever worn ooops It makes me panicky just the idea of getting rid of them even though I can’t physically stand up in heels now!
Sorry hun - I was talking to someone called Rebecca on the phone while typing & brain warped. Tell Rachael - sorry - that was a blonde moment!
Hi Linda, The wonderful thing about children/ young people is that they adapt really quickly to changes in their lives. It sounds like your daughter is already starting to take on board what has happened and try to live her life to the full. I’m sure that as you see that she is coping better, it will also help you deal with her situation. Good luck to you both! Teresa xx
I’m so glad you all had a lovely holiday apart from the few odd melt downs and wobbles. Tbh, what family holiday ever goes completely smoothly even without the rubbish that comes with a new, chronic condition?
I think Rachael coped remarkably well and it sounds as if she is realising that a few sensible adaptations here and there can mean that she can make life easier for herself. I’ve had to give up on heels (except for 2 favourite pairs which I keep for special occasions IF my legs will let me get away with them lol) so I feel her pain on that one. Much to my son’s disappointment I’ve still got a shoe fetish (can never pass a shoe shop) but I agree with Sonia and love Hotter shoes. There is an outlet centre near us and I can get Hotter shoes for £30 full price there and £20 in the sale. Some of their flatty courts are not too granny ish and as they are comfortable and provide proper support for my feet I’m so happy that I can again have a pair of shoes in every colour .
I did think of you both while you were off the board and was hoping that your holiday was the break you all deserved and it sounds like it was. What’s more it proved to Rachael that there IS life after diagnosis. Here’s to the future … it’s looking a bit brighter now, I hope?
Glad you had a good holiday. I love Italy too and luckily have a friend who lives in Rome so try to go at least once a year. Oh it must be so tough for Rachael being diagnosed so young though I am sure having such a lovely Mum is helping. I was diagnosed only a couple of years ago and although much older than your daughter ( I am in my 50s) I have always loved fashion and especially shoes so having to give up wearing heels has made me a bit sad. However I have made a bit of money selling my heels on ebay and donating 10% to the MS Society along the way and have found some great fashionable flats. Here are my tips
- Though very comfortable I don’t particularly like the styles of Hotter shoes. However I did find one pair of lace up suede Hotter shoes in mauve with ribbon ties that are quite funky - so the lesson is to dig around in shops that we might initially dismiss and you never know what you might find
- In winter boots are great as there are some fab flat or very low heeled boots and they also give support around the ankle. I tend to buy good quality ones in the sales - had some nice black patent ones by Cara last year and some posh ones from Hobbs - both look good with skirtsor can be worn with leggings or skinny jeans
- Lots of young girls like to wear ballet pumps but they offer little support and tend to fall off so look for those with straps or elastic across.
- Clarks have much more fashionable shoes than in the past and many of them are flat with good support. Other brands to try are Ecco and Camper ( in sales as expensive) and also look in TK Maxx where I have picked up some great bargains in flat shoes.
- Normal heels might be out and wedges but she might be able to wear a low wedge if the shoes offer support - I bought a pair in John Lewis with wide elastic straps which are great under trousers for work
- Sandals can be tricky as many don’t offer good support so when you find a style you like and if you can afford it buy a few pairs. Again sales are great. Last year I bought some Kurt Geiger plastic sandals for just £9 in the sales and they are great as they gave a closed in back and tie around the ankle so give great support.They are my most comfortable sandals to walk in and I can wear them to the pool or on the beach. And they look modern and stylish too. In fact I bought 3 pairs. Don’t know if they are still available but might be worth checking online.
- Maxi dresses are great in summer and look good with flats - and you can hide your shoes if not keen on them.
- If she is self conscious with a stick you can get nice fold up ones from Switch Sticks in all sorts of modern designs and keep one in a handbag just in case. There’s another company called something like Glamsticks that does fancy sticks and I think they can customise them for you.
- It might be good for Rachael to meet / chat to other young people with MS - when she is ready there is the forum for young people on this site or your local branch might have a social group or young persons group. You might also ask your MS nurse or local MSS branch if there is a course in your area for the newly diagnosed - you should be able to accompany her.
If Rachael has not seen a neurophysiotherapist then I would recommend asking for a referral or going to your nearest MS therapy centre if there is one nearby as they be able to offer exercises and offer advice on how to improve her walking.
As she has RRMS things may well improve anyway - is she recovering from a relapse at the moment?
Finally I hope you are looking after yourself and have support from friends & family as well as this forum of course- as mums we worry about our children constantly and having a daughter with MS must be tough on you too. So do take care.
Hi guys thanks for replies. Sonia - will look into make up by Bare Essentials and hopefully find stuff to suit her. JBK - do not worry about it, I am not blonde but have many many blonde moments. Teresa - I hope she is coming to terms with it and if I can see she is coping better I can maybe relax a little, it is exhausting being on high alert at all times. Sonia and Tracey - will look online at hotter shoes and see if we can find anything comfortable, supportive and sparkly, she is a girl that likes sparkles. Hilary - wish I knew someone who lived in Italy, would be a permanent lodger if I did. Would seriously consider moving there as we all love it so much. Will have a look at Camper, Ecco and Clarks although the last time I got her into a pair of Clarkes shoes was about 10 years ago, lovely wee black patent ones with butterflies on the front (can’t see her letting me put her in them today). Rachael has seen the physiotherapist, and she gave her a gym prescription so we go to the gym twice a week at the moment working on cardio and strengthening excercises so hopefully she won’t need the stick now we are back home. Will buy sparkly stickers for it online and put it away just incase she does. She is recovering from a couple of mammoth relapses, the first put her in hospital for 2 weeks, when she came out she had another one and had steroids, since then (June/July) she has had a couple of sensory relapses, numbness coming and going, balance going, vertigo, itchy skin, tremors and a funny gait. She has never been free of symptoms since diagnosis, just sometimes a little less only for something else to go. Again, thanks for replies and good wishes. I really appreciate it. Linda x
Glad the holiday was good, even with a little upset from rachel.
She battled what
normal teenagers battle…hair and make up and fashions. No different to mine when they were in their teens.
You got her through the worst times. You take a rest now as well as rachel, yeh?
Your words to me in a recent post, are much appreciated luv.
Hi Linda, I checked with Hannah and she buys Lily Lolo (I think the website is simply lilylolo.co.uk). She also agreed with me and said she can put it on when she’s on the bus Good luck with it, it does look nice - Sonia x
Thank you, just having a wee look now. Linda x