Needle point, one of my favourite things to do!
Threading A needle is fun when there’s TWO of them (thank you double vision)
Sewing a seam is joyous when you need the cloth and the thread to be identical in colour. This means with my MS vision I can’t tell where I have sewn and where I need to sew (thank you loss of contrast)
It’s no wonder I always end up with a pile of items waiting to be repaired!
When something joyful becomes dreadful!
40 minutes later and I’m still trying to thread the needle!
Obviously the danger is this, having a disease that drains my energy so rapidly means that I do tend to fall asleep at the drop of a hat! This always happens if I’m stationary for a long time. If you weren’t aware, sewing requires you to sit on the same place for a certain amount of time. It really wouldn’t take much for me to nod off & poke myself in the eye with the needle!
Thats why we’re MegaSpecial! Because we do really silly things, the great thing is, we train ourselves to laugh at the silly things! It gets us through!
Learning new skills when you have MS is like trying to ride a bike backwards!
You need patience of a saint and do not cry when you fall off! Just pick the bike up and away you go again!
Today I went to an exercise class purely for people that have MS. This class is funded and run by the MS Society at my local Leisure Centre. It’s on twice a month and I go to it whenever I possibly can.
I’ve been going to these classes on and off since the summer. They are challenging, tiring and great fun!
The class is taught by Laura, a wonderful fitness instructor I know from a class called ‘Forever fit’. This class is for seniors and is on after the Pilates class I attend on a Wednesday.
All of the exercises in the MS class are done whilst sitting down, which means that everyone can take part, no one is excluded from these classes!
Who’d have thought marching your legs and lifting light weights with opposite arms at the same time would be so confusing!
Who’d have thought lifting your legs whilst tapping your feet forwards, centre, back, opposite leg and repeat would be so confusing!
It’s like patting your head with one hand and rubbing your tummy with the other! The brain has to do two things at the same time with both hands, you have to really concentrate.
So let’s now imagine everyone in the room is tapping the floor with their feet at the same time, great!
But then…
What, what, someone is out of time! Now I’m getting confused because the beat is changing. It was then that I realised the lady wasn’t tapping out of time but her right leg had started to tremor and was tapping uncontrollably. Now everyone had lost their concentration, we all started to laugh as the lady with the tremor tried to control it!
It’s moments like those that are priceless, when a group of people all with the same debilitating disease can laugh at it. When we see the funny side to our ‘uniquely different’ debilitating disease!
This is where my other saying for ‘MS’ comes from, ‘ManySmiles’
If you know anyone with MS (if you have MS yourself you’ll ‘get this’), take notice next time you are in the company of these wonderfully MegaSpecial people. See how much they smile! Hear how much they laugh! Then notice that it’s normally at ourselves!
I had a lovely card off one of the ladies at the exercise class today, unfortunately it’s in the car and with the temperature somewhere near 0°c I’ll leave it there and share it with you tomorrow! All I’ll say is, it’s beautiful! Its so lovely that I needed to hug her directly after reading it!
That was my workout done for the day!
Deb got home from work at 17:45 had a cup of tea and went off to the gym! What a difference in us both!
1: We now exercise regularly
2: We eat healthily
3: I only did one work out today!
Yep! What a difference! I hung up my Wonderwoman suit! I said to myself (and Deb of course) when we got back from our lovely holiday that it was definitely time for me to apply the brakes, so that is exactly what I have been doing! And I feel proud for doing it! I hurt more because the hormones released when exercising help me manage my pain but, I feel proud!
Can I ask a massive favour, please can you sign this petition and share it with others to.
This medication is NOT available in England yet but if it was it would help me and a lot of my friends that have MS!
If there’s one thing I can guarantee with my MS, it hates the slightest change in temperature! Anything between 18.5°C & 20.5°C is fine but lower or gawd forbid higher then there’s trouble!
Me (right) and my MegaSpecial Sistaaah Sare (left) in Cyprys
2 years ago I went to visit my Mum in Cyprus with my MegaSpecial Sistaaah Sarah (from another mista, aka my best friend!) Her MS just adores dry heat and my is it hot in Cyprus! Unfortunately I spent most of the holiday in so much pain! Luckily I had my Mummy and DdyPaul looking after me whilst my MegaSpecial Sistaaah Sare was keeping me busy with laughter!
Despite the pain I still had a wonderful holiday!
On the other scale is days like today when the temperature really starts to plummet and winter sets in! Nights like this when I have to increase my ‘Pregabalin’ (nerve pain meds) to help me with my pain through the night!
I’m not sure which is the worst? The pain in the winter when my Spasticity in my legs, arms and hands is worse or the pain in the Summer when my MS Fatigue is worse!
Finally I feel like I’m joining earth again after my 2 month burn out!
I’m still not back to my ‘MegaSpecial’ standard but getting there.
I wasn’t just tired, I was exhausted which meant I found it so hard to ‘cope’ with my pain!
I haven’t been able to go to Pilates classes as much as I used to and, I can’t remember the last time I went into the gym!
I really miss the gym and how incredible it made me feel afterwards! I haven’t had that feeling when I’ve been to the gym for a long time. I guess because I was so low on my energy resources!
Well now it’s time to recoup them but in a balanced way, using exercise to help build my energy.
This week has gotten off to a great start! Unlike last week I’m planning my days better and sticking to my plans!
Even though my pain in my back is gradually getting worse, making my cognition or Cog Fog incredibly bad I’m able to stick to appointment times now. I couldn’t even do that last week! I only made it to one Pilates class on time and that was because I didn’t go alone!
Yesterday’s Pilates was brilliant, just what I needed to help stretch out my back.
I spoke to the instructor ‘Lisa Perry’ before the class started and explained my problems with my back. She then adapted the class to suit the lower. . back with nice stretches and exercises to strengthen it too. That’s what it needs, strength.
Today’s class was even better than yesterday, I felt totally focused and more in control of every muscle! I feel like I’m getting stronger again. Remembering how I felt nearly 2 months ago when I was taking steroids, I’m definitely on my way back!
I even managed to hold ‘Plank’ for a short time, probably about 15 seconds which doesn’t sound much but have you tried it?
Plank
Plank, or front support in Pilates, is a well-known exercise. It is one of the most popular exercises for developing core strength and stability.
While Plank really targets the abdominals and shoulder stability, you will find that plank is an excellent way to get a full body challenge. In order to do Plank properly there must be integration of all the core stabilization muscles. The arms, glutes, and legs are active as well.
Plank can look like the up part of a regular push up. But, in most cases, a regular push up entails much more strain in the upper body — especially in the shoulders and neck — than plank in Pilates or yoga.
Picture taken from Pinterest
I was more like the second from the bottom in the above picture, for the short time I held it & then I definitely looked like the one that says ‘FAIL’ even though it was more ‘success’ than fail!
Then we did ‘Downward dog’ which is practised in both Yoga and Pilates.
Downward dog
One of the most recognized yoga poses in the West, Downward-Facing Dog — Adho Mukha Svanasana (Ah-doh MOO-kuh shvan-AHS-uh-nuh) — is a standing pose and mild inversion that builds strength while stretching the whole body. It’s named after the way dogs naturally stretch their entire bodies! Downward-Facing Dog (also sometimes called “Downward Dog” or just “Down Dog”) is an essential component of Sun Salutations and is often done many times during a yoga class. It can be used as a transitional pose, a resting pose, and a strength-builder.
Benefits of Downward-Facing Dog
If you struggle with Down Dog, be compassionate and patient with yourself; you are not the first person with tight hamstrings or weak arms. On the other hand, be diligent. Ultimately, Down Dog will start to feel so good that you will really empathize with the full-body joy that dogs display while doing the pose.
Shiva Rea
Downward-Facing Dog energizes and rejuvenates the entire body. It deeply stretches your hamstrings, shoulders, calves, arches, hands, and spine while building strength in your arms, shoulders, and legs. Because your heart is higher than your head in this pose, it is considered a mild inversion (less strenuous than other inversions, such as Headstand) and holds all the benefits of inversions: Relief from headaches, insomnia, fatigue, and mild depression. The flow of blood to the brain also calms the nervous system, improves memory and concentration, and relieves stress.
Regular practice of this pose can improve digestion, relieve back pain, and help prevent osteoporosis. It is also known to be therapeutic for sinusitis, asthma, flat feet, and for the symptoms of menopause.
Picture taken from Pinterest
Now I have only ever done ‘Downward dog’ once before in another of Lisa’s class so, I’m not 100% sure if I did it correct. All i know is that it felt really good and I got the thumbs up from Lisa so that’s all that matters!
Knowing Lisa, she would have corrected me if I was doing it incorrectly.
It was an excellent Pilates class today, my back felt good after which was wonderful!
I felt really proud of myself for doing so well!
When I got home I decided to treat myself to my old winter favourite, Galaxy frothy top – hot chocolate & decaf coffee! So yummy, I thought I deserved a treat! It may not be good for the waist but according to the recent news it would be good for my debilitating MS fatigue!
Just incase anyone missed the wonderful news about chocolate and MS fatigue… http://mssoc.uk/1NDk5BX
I’m ok with that news!
Then to make the day even better in an odd way I declined going to the gym with Deb and our friend Adam! My reason, because I was just so awesome in my Pilates class that I needed to relax for the rest of the day and evening!
Such a shame I couldn’t go because I was really looking forward to lifting some weights with Adam! My thoughts, there’s no rush!
Plans for the rest of the week… dentist check up tomorrow! Eik!
However, its not just any Monday!
No, it’s drug day! *courtesy of the NHS*
So, every 28 days I go into hospital and sit hooked up to a machine! I’m there from the hours of 8am until anywhere between 11am & 1pm!
That’s right, tomorrow is day 28!
Thank goodness for the wonderful monoclonal antibody that affects the actions of the body’s immune system.
*Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage*
Thank goodness for this wonderful drug that keeps my relapses at bay and is helping me live as much of a normal life as is possible with Relapsing Remitting Secondary Progressive Multiple Sclerosis
*Secondary-progressive MS: People who get this type usually start with relapsing-remitting MS. Over time, symptoms stop coming and going and begin getting steadily worse. The change may happen shortly after MS symptoms appear, or it may take years or decades*
But I still have relapses, or at least I did until I started…
2.3 Natalizumab (Tysabri) is administered by intravenous infusion; the recommended dose is 300 mg every 28 days. Natalizumab costs £1130 per 300 mg vial (according to the manufacturer’s submission), so over a year the cost of the drug is approximately £14,730 per patient.
Multiple sclerosis – NICE
Yes I set 3 alarms to wake me for the gym!
Yes I cancelled all 3 alarms when they went off this morning, I didn’t even select snooze!
Yes I slept until 9am!
NO I didn’t go to the gym!
No I’m not annoyed with myself!
No I can’t still go to the gym. Oldest dog, ‘Princess Olivia’ has hydrotherapy at 11 & then doors to gloss
This is the first time I’ve been ok that I haven’t been to the gym!
Last week I only went to one Pilates class as well!
It’s ok to rest!
It’s ok to take it steady!
There’s no competition!
Living life the MegaSpecial way! 