My MegaSpecial life

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When your so tired you could fall asleep as soon as you sit down!

Yesterday I called into the vets to collect ‘Princess Olivia’ aka Ollie medication which should have been ready and wasn’t. Humph!

Basically now my hands are weaker (thanks MS) I have been struggling to ‘pop’ the capsules out of the blister pack without splitting the capsule resulting in the contents of the capsule – tiny Tramadol beads flying everywhere!
I’m sure you’ll agree that this isn’t the best when you then have to bend down and pick the hundreds of tiny, and I mean tiny, balls up!

I’m a strong believer in making people aware of a potential flaw in a product and it’s packaging. So I phoned the vets last week asking them if it would be possible to revert back to the brand of medication Ollie had previously as the packaging for these was fine.
It turned out that they weren’t able to do that and when I had explained my troubles they agreed it would be fine for a member of staff to ‘pop’ the capsules out of the blister packs for me.
I left it in their capable hands and at the beginning of this week I had a call advising me that Ollie’s medication was ready for me to collect.

That’s where I was when I took this photo!
Yes her medication was there but it wasn’t ready! The staff I had spoken to about the packaging hadn’t left any notes about my phone call and so the capsules were still in the blister packs.
When I explained to the lady serving me that “I think the back part of the blister pack is made out of led” She tried to ‘pop’ one and guess what happened! Well the capsule didn’t break but it was very squashed.
The lady disappeared, when she returned she said they were more then happy to take the capsules out of the original packaging for me but, next time if I could ask for them to do it before I call in to collect! Really! I HAD just explained it all to her!
She advised they would be a while and invited me to sit down and wait.
When Ollies’s Tramadol was ready a different staff member bought them to me and again asked me if I could advise them to do this before calling in to collect! Oh my days! I had honestly already spoken to 3 different people over the phone about this before collecting! Me thinks the staff members need to learn how to make notes!
*Photo time!*
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I look awful in this photo, (it shows better in the first picture how tired I look) I’m quite proud of myself for sharing it with you!
This is how tired I get after an hour in a Pilates class, a coffee after (tiring because of all the noise and not just from our table) and then a very brief shopping experience for groceries (also extremely tiring, maybe even the most tiring because of the noise and also the amount of people busying around!)

What I didn’t need was to have to wait for Ollie’s medication, like I said at the beginning… I sit down, I wanna sleep!

Some people don’t think I have a busy life because I don’t work, actually I’ll change that… I don’t work because I can’t work!

Some people just don’t realise how it’s a full time job maintaining your own health when you have MS!
This is what I work at! Staying well for myself and my family!

Some people don’t think about all the little things that they can do and without a second thought, actually these little things can be the hardest things for us to do!

How hard it is to get up in the morning, how hard and how exhausting it is to have a shower, how tiring it can be to drive anywhere, how stressful in can be to make sure you are at a Pilates class in time!

I’m very lucky that I have the most wonderful Pilates instructors who are so understanding and compassionate!
It doesn’t take much to have a little compassion!

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Call me crazy but I love suffering the day after a workout

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I’m back!

Tuesday was my first day back to the workout I love so much, the one I am most passionate about, Pilates*

*Pilates aims to strengthen the body in an even way, with particular emphasis on core strength to improve general fitness and wellbeing.

6 weeks is a long time!

It has been 6 weeks since I noticed my legs were much weaker than normal, since I went numb from my torso down to my feet, since my balance disappeared and I started walking with my feet wider apart making it a little easier to stay upright.

Steroids

It has been 4 weeks since I saw my GP and was prescribed Steroids for a possible relapse!

The neurologist that I have no faith in!

It has been 3 weeks since I had an appointment with the Neurologist that was so rude to me and made me cry! The Neurologist that told me I’ll be feeling better in the spring, that I don’t have Drop Foot even though my Neuro Physiotherapist referred me to be assessed for FES (Functional electrical stimulation *FES* is a treatment that uses the application of small electrical charges to improve mobility. It is particularly used as a treatment for foot drop.) He told me I don’t need the ‘Foot-ups’ or also known as ‘ankle splints’ that my Neuro Physio gave me. I have been told to use these on both legs all the time to help with my ‘drop foot’, because if I don’t I trip and fall! Yeah, I’m to throw those in the bin! And he said I don’t need the 2 crutches I was using that day (because the steroids I was taking make me feel weak!) His reply was that steroids don’t make you weak they make you strong and that is why athletes take them!

Now I understand that not everyone will know this but, from experience of taking steroids and understanding them in great detail I am aware that there are different types of ‘steroids’ and they are used for different things!

  • Corticosteroids – a class of drugs used to treat relapses in Multiple Sclerosis and many other conditions
  • Anabolic steroids – abused by some athletes and others to enhance performance.
    Anabolic steroids are synthetic substances related to the male sex hormones (androgens). They promote growth of skeletal muscle (anabolic effect) and the development of male sexual characteristics (androgenic effects).

It doesn’t take a degree to work out which ones are taken by athletes to make them perform better!

Looking at the huge list of side effects that come with Corticosteroids (the type of steroids I was prescribed by my GP) Methylprednisolone in particular, you will notice it states that Muscle weakness is one of them!

All that information on Steroids is found here What is the difference between Corticosteroids and Anabolic steroids?

Relapse or flare up?

I was told that I didn’t have a relapse which is fantastic news! If I had then they would have taken me off my monthly drug ‘Tysabri’ that helps to stop relapses. I’m so grateful that my MS team are happy for me to stay on Tysabri! I’ve been on it for 3 years now and in that time this last ‘flare up’ has been the closest I’ve felt to relapsing. Before Tysabri I was relapsing every month so I’d rather stay on it!

Back to my workout

There’s always a first for everything! For the first time I actually gave myself time to recover from my flare up, I didn’t go to a Pilates class until I felt completely ready! I didn’t think it would be as long as six weeks though! Another first is that I am taking it steady as well, I’m not going to over do it because my body isn’t what it used to be. It’s the only one I have and I need to take care of it!

Tuesday was my first day back to a Pilates class, it was so much harder than I remember which is proof that I do need to take it steady. It was amazing and yet frustrating at the same time. One thing that isn’t a first for me is ‘beating my self up’ I get so annoyed with myself when I can’t do all the stretches properly. The new Pilates instructor Lisa Perry  kept telling me how well I was doing. I took the compliment and had a little chat with  myself, I have nothing to prove to anyone, not even myself! For someone of my limited mobility I’m doing pretty amazing! That feeling after when my muscles had woken up was brilliant. Lisa’s classes are such good fun. The stretches she teaches are great, I’m sure she adds in a few Yoga posses which are hard but feel incredible! I’d like to learn Yoga but definitely one thing at a time!

Yesterday was my second time back at Pilates, a different type of class with Hannah Bailey. Fantastic! Hannah’s energy is amazing, she puts every ounce of it into her classes and really pushes you to reach your ultimate! Her classes are fast, she qualified to teach PiYo* earlier this year, I’m sure she is throwing in a few PiYo exercises into the Pilates class. If she is then I’m up for it but I must take it steady!

*PiYo combines the muscle-sculpting, core-firming benefits of Pilates with the strength and flexibility advantages of yoga. Piyo cranks up the speed to deliver a true fat-burning, low-impact workout that leaves your body looking long, lean, and incredibly defined.

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