Just realised I haven't posted for a few days so thought I would give a round up of what's been happening and what I am doing right now to help improve my symptoms:
Diet/Supplements
I am now about 5 weeks into my auto-immune protocol and I had a minor blip in the first week and a major readjustment to my meals. One of the keys things we did to start was to do an antiviral protocol to get rid of the viruses within my body. I am lucky that my GP is very supportive of my non-medical routes to improving my health and she allowed me to have the viral screening test done via the NHS. I know not everyone has such willing doctors and may have to pay privately (I think the cost is about £300). My test results showed that I have the following viruses in my body:
Varicella-zoster
Parvovirus IgG
EBV (Epstein-Barr virus - glandular fever)
The antiviral protocol is basically several supplements that I have to take for about 3 months which should remove them, I am not sure whether I have to repeat the screening test at that time. When I first started taking the supplements I got really bad bloating - now I always bloat but this was really uncomfortable and lasted for a much longer period. We decided to put a hold on two of the supplements and come back to them at a later date. I am not going to list my supplements for this because no one should be doing this protocol without working alongside a specialist who knows exactly what they are doing. I am not sure if either of the supplements we put on hold were causing the issue as I am still getting bloated but nowhere near as badly.
To combat the bloating we have added a digestive enzyme and betaine, HCL, pepsin and gentian bitter capsules with my main meals. I think they are starting to help which is good. I've also cut out the key inflammatory foods that my nutritionist said anyone with an auto-immune disease should avoid - these are corn, soy, spinach, tomatoes, beans, lentils, and peas, which cross-react with AQP-4. I had already cut out most of these a while back but was still consuming tomatoes and spinach. Life without tomatoes has been a harder adjustment as many of our meals contained these in some form. However, my health is more important than what goes in my body. I have made a lovely pepper based pasta sauce that was super easy and tasty (basically roast 3-4 red peppers, leave to cool and remove skins, fry some shallots and garlic then add the chopped peppers and some vegetable stock, remove from pan and blend). My friend also recommended the Belly Goodness to me - and although they are slightly more expensive they are really tasty sauces which tick all my boxes. We've had the Curry, Mediterranean and Chilli so far and yes not quite the same as what we used to have - I can eat them with the family and that's what's important. Definitely worth giving them a try for when you don't have time to cook from scratch.
I also recently did a food sensitivity test through Victoria and this came up with rice, beans and brussel sprouts. I haven't eaten beans for years and well brussel sprouts have never been in my diet as I can't stand them no matter how many times my parents tried to force them on me or my husband says come on try them they are delicious lol!! So not happening and perhaps I always knew why - my body doesn't like them either haha! Rice has been hard for me to cut out as I didn't realise how much of it consumed - most meals either as rice or gluten free pasta made from rice! This has forced me try something I've never been sure about - Cauliflower Rice - which surprisingly is actually really nice when stir fried with other chopped veg. I've also discovered sweet potato rice which is really tasty. So, I am experiencing new tastes in the kitchen and I actually do feel good for it. Plus I weighed myself this morning and I've lost a stone over the last few weeks - I think that is due to my OBP training and the change in my diet. I can't lose any more as I am only little so I need to find ways to keep it at that level.
This bring me on nicely to...
Exercise
I've been doing the MS Gym with Trevor Wicken for around 2.5 years but in April was introduced to Optimal Balance with David Lyons. David has MS himself so he understands the challenges we face. I've been doing his contraction training programme since then and my muscle tone has massively improved in my arms. I definitely think it has in my legs but this is a much slower process, I can see improvements when I do the exercises so I know they are getting better but that doesn't reflect into my walking yet. I don't really use the MS Gym as much now, I do a few of the exercises I know well but I feel that my body needs pushing harder now and I can incorporate the key things Trevor taught me into my Optimal Balance workouts. I recommend both - they are vastly different and Trevor will teach you in detail about your body and neuroplasticity and MS. I have learnt more from him than any neurologist.
I know it's hard to do exercise most days but it is so important for our bodies. Yesterday I woke up and I really didn't want to do it - despite it only being 4 exercises that day. But I told myself I would regret not doing it but I will never regret doing them, so I did them and felt so much better afterwards. If we give into not doing it then it will become a habit and before you know it you have hardly done anything for weeks. So, what are you waiting for just get on with it and think about great you will feel after. Every time you are helping your body to improve - so why would you not?!
Oxygen Chamber
Yesterday I did my third time in the Oxygen Chamber, it was only a 16ft dive again this time but it went well and my legs felt lighter afterwards. I also have been walking slightly better today which given I've been rubbish the last few days (will come onto that shortly) it must have been the oxygen that has helped. Even though the sessions take up a big chunk of my time I love going to them as I get to meet different people. I saw a lady yesterday who was there last week and she showed me her X-fold Rollator which I tried in the car park - I've always been hesitant of zimmer frame type contraptions but she said it has helped her walking and it's much better for walking outside as with sticks you can sometimes feel unbalanced especially on uneven terrains. I am thinking about it but then I also think what if everything I am doing starts to turn my body around do I want to spend money on something I might not use for long?! Or is that wishful thinking.... I am looking forward to my next visit tomorrow as doing the biggest dive which is 33ft... now that's definitely going to make my ears pop!
Coimbra Protocol
I am currently on week 7 of the Coimbra Protocol and it's very early days so I don't expect to see any benefits for quite sometime. I am sticking to the very reduced calcium diet and have my first DEXA bone scan booked in for October. Will also have to get my other tests done then as well, this is just so my practitioner can ensure my body is handling the increased vitamin D and then he can look to increase my daily amount further.
If you are interested in the protocol (which is beneficial to many other diseases not just MS) then it's worth joining the Coimbra Protocol group on Facebook and watch this video as well if you want to hear from others who have been doing the protocol for a while.
Hormones
I've never really considered the impact of hormones on my MS but a few things lately have made me think about this. After having 12 amazing days of feeling great, I felt rubbish and whilst talking on email with my nutritionist I realised that I was ovulating. My friend who also has MS often says to me that she knows her walking goes downhill at that time but I had never really thought about it. I do however, have a daily diary that I've been doing since the beginning of the year. Every day I track my food, exercise and how well I slept the night before. I also have a smiley face guide to how I felt the day has gone from a body mobility perspective. So, I decided to go back through it and map it against my ovulation dates. Now my periods haven't been completely regular over the last year and I've had moments where I've bled mid-cycle (peri-menopause I think) but what's interesting is that nearly every down time after a great period coincides with my ovulation dates. I always knew I peed more around that time but never thought further than that. I am intrigued by this because we know stress is a major contributor to MS symptoms and the stress hormone is cortisol - so again hormone related. I went on the pill when I was 16 due to irregular periods and looking back it was around age 17 that I remember getting pins and needles in my legs. My first neurologist said that would have been an MS indicator then - so did the pill contribute to my MS?! When my next big relapse happened in 2015 - I was on the mirena coil - so again was that a contributor?! And if these are contributors why in 2015 was I not advised that if I have MS I should avoid any contraceptives that mess with my hormones. We already know that women with MS who get pregnant see their MS symptoms lessen why is this? My head is a little bamboozled by all these thoughts and I would love to understand this more. I spoke to Victoria and we are going to do a Hormone test to see what imbalances there are so we can work to improve them. I am beginning to wonder just how much about MS is caused by simple things that we could improve without drugs if only we were told from day 1 diagnosis, and that the pharmaceutical world know this but don't want to share this knowledge because it means less money in their pockets... Not that I am cynical lol!!
I will keep you posted on everything as always and remember stop making excuses for improving your day to day life and focus on exercise and diet as just small changes will help you on your way to living better with MS.
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