It's been months since I last wrote, losing Ziggy put me off track with the whole writing malarkey and then life got really busy and the idea of spending time writing just didn't appeal so I stopped. However, in my heart I did want to write as I know my words can help others and yesterday I had the pleasure of speaking to two fellow MSers who inspired me to get blogging again. So here I am, I am back!
In order to make it less time consuming I am not going to focus on adding lots of images - if they feel necessary I will add them but if the page is just words that's okay with me and I am sure my readers won't mind either.
So, the last few months. Let's recap. I have a new kitten (yes I might need to show you a photo of him!), he is Ziggy's half brother. His dad is half Maine Coon - which I think may show in his mischievous personality. My husband calls him 'dickhead', my son calls him a 'terrorist' and I call him a 'monster' BUT he is also really cute and affectionate so we love him lots. His name is Twiglet and he was born in April. He is just learning to explore the outside world which feels me with dread, but cats belong out there and with a dog and an older cat (who is not best pleased with us for bringing home another kitten!) who go outside it would be impossible to keep him indoors. I keep telling him to be careful of cars and not to go in the road but not sure he understands me :-)
After my last detoxes with the Taopatches I found I wasn't getting the same results so I took them off for a few days and immediately I noticed that my foot drop worsened. So, back on they went. However, more recently I haven't been wearing so many of them but that's because of other developments, which I will discuss further down.
Exercise Update
In April, my friend with MS introduced me to the Optimal Body Programme (OBP) with David Lyons - David actually has MS himself. The workout programme is very different from the functional workouts that the MS Gym offers. David has a completely different viewpoint on this. I started off doing both the MS Gym and the OBP workouts but getting these both done and doing everything else that happens in my life was getting quite hard. Then my knee/hamstring which had been playing up since last year, got much worse. I think this was a result of two things - 1. doing too much and 2. my body changing as a result of the new workout. My osteopath just thinks my knee is inflamed and angry because I am starting to use it in a new way (well in the way it should be used but hasn't been for the last few years) and that it is all just part of the process for changing things for the better. I really hope he is right. It makes sense. Over the last few weeks I have started using the MS Gym less and less but I use many of the things I have learnt from the MS Gym in my exercises with David. I just think I have moved on and I am taking everything I have learnt with me on my journey to the next stage. I am still on the first programme for OBP - which is contraction training. You order contraction bands from Amazon and use them over a door or add them to a bolted hook on the wall (my lovely husband did two hooks for me in our gym so I can easily put them up high or low). There are 3 days of exercises, then a rest day and then you start again. You don't move on until you are ready and some of the exercises will challenge your balance so you may not even be able to use the brands to start with. When you start you will be like OMG I can't do that, believe me we all feel like this, but you can and things do improve - slowly but still in the right direction. There is a members group on Facebook and everyone encourages everyone else and gives advice. I love the workouts as they aren't too long and I feel like I am seeing progress. If you want to find out more - please visit his website
I also still see my PT friend every Monday - she always impressed with how the things I do help my body improve more and more. We are really trying to work on strengthening my glutes - and I have a great new gadget that helps with that (see further down for more details). Most nights after I have massaged, I will do some hip bridges, clams and leg movements just to help build up the strength. I do need to get walking more, the last lockdown really put me backwards on that, as the cold weather and the rain does not appeal to me so I would rather hide indoors!
Diet and Supplements
My diet has always been a major frustration for me as I seem to bloat randomly with different foods. I am always interested when I see people get benefits from various diets but there is so much conflicting evidence out there it is hard to know what's the right thing to do. I was seriously considering the Canivore diet when my husband pushed me to find a qualified nutritionist to help workout the right thing for my body. I did some research and found an auto immune nutritionist who has helped many people with MS. We started off getting tests done first so we can workout the right way forward. I had a viral screening test done and guess what - I had the Epstein Barr virus in my body which has been associated a lot with MS - I recall being off school for a few weeks in my teen years but was never told what it was, now we know. I also have the Varcelli Zoster virus (again there are links with MS) and some other viruses. So our first plan of action is to rid my body of the viruses and improve my gut bacteria. My stool tests have shown I am too gram-negative so we need to work on balancing this out. My supplements all arrived today - so now I have even more tablets to take but if they improve the way my gut works then I am all for it. What I like is that this process is evidence based and it's all about me. We are all different so what works for one person won't necessarily work for someone else. We will assess everything after 8 weeks and then hopefully move onto making other improvements.
The diet to go alongside this is not vastly different to what I have been eating but I do need to cut out spinach and tomatoes (there was a list of other food items that aren't great for auto immune disorders but I already don't eat those). Cutting out tomatoes is going to be hard for me as my favourite food is spaghetti bolognese but I will do what needs to be done. Our food bill has gone up quite a bit as I had already made the move to eating grass fed meat and wild fish and that is one focus for the diet as well as organic food. I never used to think about what I put in my body but I am realising that is highly important for good gut health and wellbeing. Four years ago I would have found it hard to cut out sugar - now it just seems like a simple thing to give up if it means my symptoms might improve - or not get any worse. The hardest thing has been cutting out cereal for breakfast as not only am I doing the gut health stuff I have also started doing the Coimbra Protocol.
The Coimbra Protocol was started in Brazil and the theory behind it is that people with auto-immune diseases have an increased resistance to vitamin D therefore by increasing the level of Vitamin D absorbed into the body it overcomes the resistance and gives people like me the benefits that our cells need to thrive properly. You can read more about the protocol on this website and it is advise that anyone taking above 10,000ui D3 daily seeks medical advice. You should not do the protocol without a Coimbra Protocol practitioner this is because you will require multiple tests before starting and you have to be extremely careful with Calcium levels as a high level of Vitamin D and Calcium can have a negative impact on your kidneys. I joined the Coimbra Protocol group on Facebook and found a link to a practitioner in Portugal who speaks English - Dr Miguel Damas. The protocol is not expensive to follow and I have read many testimonials from others who have successfully reduced their symptoms and haven't progressed further. It is not a guarantee and a successful outcome will be no further progression but Dr Damas hopes I may see improvement in my existing symptoms (my main symptoms are mobility due to my right leg and weak bladder). We had a Zoom meeting after all my test results were complete and he has started me on 40,000ui per day. We then reassess at 5 months - and at 4 months I have to have all the tests done again - this is so he can monitor my calcium levels, I will also require a Dexa Scan to check my bones as it's important to keep an eye on them especially as you pretty much remove calcium from your diet on this protocol.
Having already cut out dairy my calcium levels aren't that high and my PTH score which is important when doing this protocol is currently 2.0 - the aim is to have it no greater than 1.0. Since I had my initial tests I have removed my daily cereal which I had with almond milk. You are not allowed nuts and seeds on the protocol, no dairy and no leafy green vegetables juices/smoothies. You also need to ensure your water is below 50mg/L and ideally below 25. As you will know the UK has very hard water especially where I live. To help resolve this issue we purchased a Virgin Aqua System which purifies the water and gives us instant hot and cold water which is great - however it does not remove the calcium. To test this we purchased a kit whereby you can tell how much is in your water. We tested the cold water and the hot but both were over the 50 mark. We then also just tried the cold water after it was put through my Brita filter but still it was over - we then took the hot water from the Virgin Aqua and left it to cool - we then put it through the Brita filter and success!! It only took about 1 and half drops to turn blue (soft water). So, I am hopefully that by removing my almond milk and fixing the water my next test results will be better. If we can reduce my PTH and my body doesn't react badly to the higher Vitamin D level we will be able to increase the amount I take daily until we find the right level for me. You will have ongoing meetings with your practitioner and testing will become norm BUT if the benefit of all of this is no more progression and hopefully some improvements then I am happy to eat the way I have too to make it work.
I will keep you posted on both the work I am doing with the nutritionist and the Coimbra Protocol.
Gadgets
If you have read my previous blog posts you will know I am a gadget queen and will try anything to improve my symptoms. I have two need things since I last wrote - the first is my LifePro Vibrator Plate - I absolutely love this. I do a 15 minute session before my OBP programme and afterwards I use it to stretch my hamstrings which are notoriously hard to stretch and then lay my calves on it and then my outer thighs. I always walk more lightly after using it. Apparently there are lots of benefits to using one particularly for people with MS and other diseases. I was lucky to get mine on offer during the last Amazon Prime Day sale - but if you want to get one here is the link to the one I have.
My 2nd purchase is not really a gadget but rather specialist clothing. I recently stumbled across an advert for Infrared Clothing - there are many benefits to Infrared and I have tried a few machines but they are extremely time consuming and you can only focus on one area at a time. So, when I saw you can have clothing with the infrared technology woven into it I was impressed. The company Kymira Medical are actually located not too far from me so I had a long chat with them and they agreed to come and show me the technology in action. Stu and me were impressed - it would not only benefit me but also could help with his arthritis. I purchased a pair of their leggings and some socks. From the moment I wore them my legs felt different - after a few days, I didn't want to remove them. My body was definitely seeing benefits. After sitting for long periods, my legs didn't feel as achy - my circulation in my feet is improving - slowly but I can't definitely see changes. My feet haven't been as cold at night as they usually are and they haven't gone purple lately (which normally happens frequently) and the swelling is down. I am amazed and I can't wait for them to bring out their pyjamas which are coming soon and hopefully more lifestyle wear clothing. If you are interested to find out more you can use my referral link to get 15% off your order I absolutely love mine and I am hoping in time this in combination with everything else I am doing will improve my mobility.
Some of the Benefits of Infrared Clothing
- Relieving arthritis joint pain - Reducing swelling and puffy joint - Soothing shoulder pain - Relieving hip joint pain - Easing muscle strain - Promoting circulation - Improving joint and muscle flexibility - Flushing out toxic waste from the cells, organs and joints - Reducing back pain - Treating restless leg syndrome - Relieving stomach cramps
Remember there is not one single cure that is going to improve your life with MS but finding all the right parts of the puzzle can help you on your way.
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