(Belated) MS Awareness Week #2: Ten things that are weird about me and MS

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  1. I can’t walk very far, but I can cycle for hours.
  2. When I am in the depths of fatigue, I find it hard to sleep. Brilliant.
  3. When I was pregnant, I had absolutely no MS symptoms whatsoever.
  4. No-one else in my family has MS.
  5. When I’m feeling MS-shit, I don’t look ill.
  6. Whilst I am teaching or practising yoga, my MS disappears.
  7. When my leg weakens after walking it recovers completely after a little rest and a chocolate biscuit. I’ve yet to work out whether it’s the chocolate biscuit or the rest…
  8. Caffeinated coffee makes my right hand buzz.
  9. I can remember 5,000 things to do with the house, school, work and multi-task the fuck out of my to-do list, but if you ask me to fill in a simple form, my brain turns to mashed potato and I have to get my husband to do it for me.
  10. One of the hardest things for me to do when I’m MS-y is concentrate on anything longer than a simple sentence. Hence the lists.
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A week off (and a scary-looking gold bunny)

IMG_5420Is it ok for (MS-y) me to have a week off being as healthy as possible?

Apparently not.

Every Christmas, Easter, birthday or occasion-of-any-sort equals more sugar, wine (I can feel hungover after a small glass, so I’m not talking a lot of booze here), less helpful food choices and uncomfortably NOT doing yoga (I start to feel uneasy by day 2 of not yoga-ing).

During these times, I end up gradually ignoring everything I know about how to take care of myself and eating myself into a state of headachey-fatigue.

So here I am.  All slumped and exhausted. My rubbish bin full of Easter egg foil.

Apparently some mice with autoimmune disease have been seen to increase levels of myelin through fasting, and in some cases have completely reversed the disease process. I am currently way too foggy and auto-immuney to work out how the hell they know this about these tiny little creatures with their tiny little myelin sheaths.

I wish they would put me on a fasting experiment. It might sort out my unstoppable sweet tooth.

So here we go again. Back to the beginning. Back to cutting down on all those delicious energy -sapping culprits.

See you on the other side.

Lynne x

Wibbly Wobbly

This time last year I was wobbling all over the South Downs, testing my balance after the first round of treatment. And I took photos of it.

This year, I have had the sense to photograph a gorgeous October day without my comedy Instagram Yoga Moments.

So here’s my gorgeous October moment post treatment 2016. Yes I can walk, but nope, I cannot balance. I’m not in this picture because I am most probably on the floor.

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Early days. Early days.

 

 

How to combat fatigue

Here’s my bossy little list of ideas on how to combat fatigue. Apart from the fact that I love writing lists – shopping lists, to-do lists, lists of other lists that I want to write – this process has helped me so much in times when my brain is overwhelmed and I am so tired that I feel like I’ve got absolutely no control. Anyone who goes through periods of fatigue, anxiety, depression, stress, overwork or just a longer-than-normal illness may benefit from any of these. Or maybe you can help someone you know by reading about it. Remember that we all deserve to take care of ourselves (It has only taken me 39 years to work this out).

  1. Stay positive. This can be tricky, especially if you feel nervous about your symptoms and have such a tired brain and body that the simple act of having a shower feels like a massive task that will make you need a lie down afterwards.
  2. Have a lie down afterwards. If you have a shower and feel like you need a lie down afterwards, have a lie down afterwards. Even if it’s just for 5 mins. It will help. I find that lying as flat as possible with a cushion or yoga block under my head if I’m feeling a bit dizzy helps the most. Much more so than sitting on the sofa in an awkward position. And if you have children to look after, play “bedtimes” and let your children tuck you and their dolls in with a blanket. Don’t ever dismiss an opportunity to lie down. Even if it’s really short, a bit interrupted, and you have plastic arms and legs digging into your ribs.
  3. Eat properly. As much freshly cooked, nourishing food as possible. Loads of fruit and vegetables. Loads of water and herbal tea (camomile is my fave when I’m feeling a bit done-in because it helps me sleep better at night and relax during the day). Freshly cooked, easy to digest food is definitely best. If it’s cold outside, eat vegetable soup. If it’s summer, eat a big salad with loads of different ingredients and an olive oil dressing.
  4. Book a relaxing massage. Always a winner. If nothing else, you deserve it. It has never not helped me during periods of fatigue.
  5. Fit in some exercise every day. If this is walking the length of the garden, or cycling the length of the country, it doesn’t matter. Just fit in what is appropriate for you and your body at the time.
  6. Practice breathing properly. And then breathe properly. Consciously, with awareness. A lot.
  7. Meditate. As regularly as possible. And build it up gradually. There are lots of CDs, apps and classes available to help you. And if you are too exhausted, get someone to find some for you.
  8. Do some yoga. As regularly as possible. Don’t be put off if you aren’t very physically able. Yoga is for everyone and as long as it is practiced safely and within your own limits, it will always make you feel better, if not amazing. There are lots of ways to practise yoga including in a chair if necessary.
  9. Write realistic lists. Gradually as you start to feel a bit more able,  give yourself a list of 3 smallish tasks a day and be well-chuffed if you do one of them. Be over the moon if you do more than one, but don’t do any if the thought of it stresses you out.
  10. Delegate. Be clear about what you need and what will help you. Don’t be shy to ask. If you are not clear, you probably won’t get what you need.
  11. Accept help. But only as long as it is helpful.
  12. Rest your brain. It’s much like a muscle, so it gets tired too. And allow your senses to rest as well. Meditation (see no. 7) is good for this, as is giving yourself some time away from the TV/iPhone/Laptop/Tablet/Kindle etc.
  13. Go to bed early. Cosy up with the radio or a good book until you feel sleepy (again, camomile tea is my saviour at times like this when I am feeling unsettled and nervous about my health).
  14. Have patience. Accept that it is likely that you won’t see a dramatic improvement for a while. But it will come if you regulate your body with a balanced and healthy routine.
  15. Say no. If you know that an arrangement will exhaust you, postpone, or even better cancel. Rearrange when you are feeling MUCH better so that there is no pressure to feel better by a certain time.
  16. Remember you deserve support. Don’t feel guilty about asking others who don’t have MS/fatigue/depression/exhausting children for help. That’s what friends and family are for. People won’t help if they can’t or don’t want to, and they certainly won’t if you never ask them. And bear in mind that they have probably offered their help over and over already.
  17. Be kind to yourself. By doing all of the above. For as long as you need and as much as you need. Your health is what matters above all else.

Fatigue. More than just feeling tired…….

imageSo here I am four weeks into my recovery. I started off well.  Major fatigue for a week or two, but I expected that. And then a gradual increase in energy and stamina. Nice one. I soon got back on my bike, cycling along our gorgeous seafront. Woo hoo. I even vacuumed our constantly play doh covered floor (once!). Who would have thought I would have enjoyed that one…

And then recently I collapsed into a heap again. I had been warned it might happen, but I did that thing that you do when you’re about to have your first baby – ignored the warning and assumed it would be different for me.

Fatigue sucks big time. It is not tiredness. It is also not how I felt when I had a baby. That was sleep deprivation which was quickly improved by the following:

a. The little blighters started sleeping more

b. I got used to it and accepted my new zombie-like state as normal

c. I lived on coffee and biscuits and dealt with the sugar induced energy slumps by eating a cake

Fatigue is also not how I felt when I had been burning the candle at both ends. Again, this was easily improved with a bit of kip and some sort of vegetable laden casserole.

Fatigue is an overwhelming physical and cognitive exhaustion, often with a sudden onset. It makes your whole body feel like lead and your brain feel like foggy jelly. A flight of stairs can feel like a mountain and getting dressed (especially the choosing what to wear part) makes you breathless. Simple decisions are really hard to make and most of the time you wish the person asking you the question would either stop asking you stuff or make the decision for you. Additionally, for me everything feels loud, bright, sharp, heavy, and really close to my face.

In this scenario, what I should really do is hide away in a dimly lit room for a day or two and do nothing but eat freshly made soup and practise deep yogic relaxation. But unfortunately I do not live in an ayurvedic retreat in India and I also have two children and a job. So the reality is that unless I simply cannot drag myself out of bed and muster up the energy to get un-naked, I carry on. I hate having to rest. I love being able to do it all. Because I am a young(ish) woman with a young family. I want to do everything and be there all the time and not have to miss out on the fun bits of life because I have MS.

But I do have MS. So I do have to rest more. And I do get frustrated. And I know that I am not the only one with tricky stuff to deal with. Poor hubby – I am such a terrible patient. And just like MS, I am also sometimes a bit of a pain in the arse.

MS – what a total pain in the arse

Most of the time I tolerate my MS pretty well. But every now and then I wake up really furious that I have MS. Today is one of those days.

I’m going to be 40 next month and what I would really like to do is start every day with a run by the sea and return feeling elated and buzzing with endorphins. Unfortunately the best I can manage at the moment is a very short stroll to the beach, whilst dragging my dodgy leg along behind me. I want to be fit, have boundless energy to race around with my kids, run lots of yoga classes, clear out the 5 years worth of crap that’s in the shed, declutter my house, make fabulous cakes and bread and look effortlessly stylish (!). At best I can maintain what I have now which is a fraction of the above. And most days I feel incredibly happy and grateful for what I do have. Which is pretty awesome.

But today I am feeling fed up. I am thinking about the fact that I AM going to deteriorate. Hopefully slowly, but who knows? As I’ve said before, MS is unpredictable, so what if my disease suddenly starts to progress much more quickly than I thought it would?

However it goes, I am already disabled. Limited. I really hate limited. Walking is already something that I can’t take for granted every day. I sometimes think about all those lazy and able bodied days that I wasted sitting around thinking I had forever to do stuff.

I wonder if this is what it’s like to be old. My brain thinks my body is still 25. Limitless and 25. Although thinking about it, if I was still 25 I would probably have woken up this morning with a hangover and my dodgy ex-boyfriend – swings and roundabouts eh?!?!