For so many years I’d wake up and my first thoughts were that although I was in pain and struggling to move that I’d do my best and try to be positive, let me say that it was hard. I couldn’t even roll over in bed to try and get more comfortable. My mind knew what it wanted to do as my bum was numb and back was aching but the physical side of me just refused, I simply didn’t have the strength or coordination. Very frustrating when you start to cramp up but your limbs won’t move to help you relieve the problem that’s getting worse every second. Anyway enough of the bad things because my everyday life is improving. I’m now waking up and not feeling frustrated or down, now it’s a case of being very pleasantly surprised because the pain and limitations are less, obviously it’s only minor but it is better, so regardless of it only being minor and a barely noticeable improvement, the fact is it is an improvement. For instance I woke early this morning around 5.30 but felt very comfortable and more importantly, not in pain. There’s no doubt that the first month was hard feeling slightly better one day but terrible the next, the second month saw an improvement in the number and length of positive spells. I’m now just about to enter my third calendar month and I’m so excited and optimistic and positive, it’s hard to explain really, I’m not cured …..yet but I know I will be… thank you…
Is it just me…
So nine weeks in and I’m not sure if someone on the outside looking in would necessarily see the differences that I’m personally experiencing, it’s not as if I’m walking or doing anything differently. But…. during the 17 hours or so I’m awake I have found that everything I do from getting out of bed in the morning to eating my food or getting my supplements or… Yes the most common thing, going to the bathroom 25 times is just that tiny bit easier. Manoeuvring about the flat so frequently is tiring, I wish I didn’t have to do it so often but I do and its slightly easier and doesn’t worry me as much. Since I came back to England from the U.S. I’ve gradually got worse, the muscle atrophy is horrible to me, I was always so proud of my strength and stamina so being in this weakened state makes me feel so frustrated and humiliated. But in the last two weeks I’ve genuinely felt stronger, now I honestly believe 100% that the transition from getting pathetically weaker everyday is slowly but surely being reversed. I know several others were fortunate as I was to be part of this group, I just hope others are experiencing improvements and it isn’t just me.
My perception.
As each day starts I tell myself that I’m going to have a good day, even before my feet hit the floor my mind affirms that I’ll feel strong and stable regardless of how my body feels and of course there are times that I’m a little weak to start but I can’t let that initial feeling dictate my day. Take today (Saturday) for example, I’d woken at 6.30 and read for an hour, I always drink a litre of water before getting up and going to the bathroom. Initially I didn’t feel brilliant but I ignored that and constantly recited a positive mantra, now I’m not saying that the mantra per se made my body chemistry rectify what was making me feel a little unstable, but the positivity it instilled in my mind certainly helped. I firmly believe that believing makes all the difference, if you believe you can or you believe you can’t…. you’re right I have told myself that the ABP will cure me, there will definitely be bad days, but they are becoming fewer and further between. My writing is better, my strength and stability are improving so it’s happening, it might be another two or three years but in my mind it’s not an if it’s a when. There’s lots of alone time, time when it would be easy to give up and tell myself it’s not working but that won’t actually help initially or in the long term, I have a gut feeling that slowly but surely it will happen and the main controlling feeling and more importantly is that my perception is that I’ll win.
Perspective
As I wrote yesterday, I think that Wednesday was a great day and Thursday although not great it was far from a bad day, in the main I felt quite good, just not brilliant. But just as everyone else doing this there’s going to be bad, very bad, not very good, good and great days and I’ve reconciled myself to accept that day as a stage in my journey. I just deal with the bad or not good days by responding appropriately, if I’m really weak I simply go rest in my bed, I don’t let myself get upset or depressed about it. This is a long undefined journey with some bad and lots of good, becoming great days. There isn’t a map with defined points on it telling me when and where the rest stops or refuelling places are so I just have to be prepared for bumpy roads or motorways as and when I come across them. The week before I started in September, Janet explained a few things to me, I knew it wasn’t going to be easy but knowing I will do this against all odds makes it all the more rewarding. My first un-diagnosed symptoms were in 1997, the early stages of RRMS which gradually led to diagnosis in 2004, I worked full time until April 2011. It’s been a very rocky road, no pun intended as I lived in Colorado, and the first neurologist told me I’d be in a wheelchair permanently within 6 months if I didn’t take the medication which I never did and never have. Looking at my life pre ABP and since starting less than two months ago, I have to put it into perspective and realise I’m so lucky. For anyone new or no longer following the program, have faith, it works, be strong and help the program help you.
So easy.
Am I referring to getting healthy, no I’m not because removing a disease that’s lived in your body for as long as most kids are in school isn’t easy, far from it, the changes, additions and lifestyle adjustments needed to kill the bad bacteria, parasites and fungi is a very lengthy, difficult process and requires real commitment. I think in most cases because this process has lots of highs and lows that it’s constantly challenging you, one minute, literally one minute the body is reacting in a very positive way to the elimination but can do a 180 degree turn the next. Because of this it requires a very high level of commitment, I’m sure that you yourself will have doubts and those nearest and dearest will see the lows and probably say it’s not working so you shouldn’t believe the “snake oil salesman” and put your faith in the doctors and western medicine because they know best. Well the facts speak for themselves, ask any medical professional if multiple sclerosis can be cured, ask to see proof of who in the past 30 years have actually been cured, guess what… none using pharmaceutical drugs… none, so they say it’s incurable. Okay now read Ann Boroch’s book or Janets story and several others then ask yourself are they better than you? was their MS milder than yours?, the answer to those questions is a resounding no….. but they did have faith and incredibly determined in the face of adversity when all around them were telling them to give up that crazy, ridiculous idea. They had, have, incredible determination and I for one want to do the same, I will accept there will be hard times and bad days but there will also be great times and fantastic days. The title of this post, So easy… is referring to how it’s so easy to become accustomed to feeling good, which I did yesterday, in fact I felt better yesterday morning right through till about 1.00 than at anytime in my MS life. It’s now Thursday morning, I don’t feel bad I just don’t feel as good as yesterday but this is just a phase of my healing, I’m closer now than ever before, it might be next year or the year after but it is happening, I’m 100% sure.
A little bit better.
I almost feel that I shouldn’t say anything for fear of tempting fate, I felt that there was a good chance that the porridge oats I was having everyday was the likely culprit for my afternoon weakness, so I had my last one on Monday. I felt great as expected Tuesday morning and decided at 12.30 to go rest, the weakness was there but definitely not as bad. I rested for a few hours then felt great so returned to my normal day in the living room and finished a good book, that’s my 27th so far this year. So not having the oats Tuesday confirmed that I’d made the right decision, I’m hoping that there will be exponential improvements over the next few days. When your life has been severely impacted by disease, obviously in my case it’s MS, then making changes knowing that by doing so you’ll significantly improve your life, not just the initial day to day things but massively improve your desire to actually live. That’s not an exaggeration, it’s a fact, getting up in the morning and knowing everything you do from crossing your legs while just sitting down or going to the loo 25 times is going to be difficult, painful and so, so frustrating, so not eating certain foods is no big deal. It’s actually quite rewarding to know that a food you ate daily, tasted good but was very likely nutritionally bereft and can be eliminated then replaced with a healthy alternative that over time will significantly help in your quest for life. I’ve probably cut out 20 different foods that I liked but we’re actually causing problems. It’s so sad that a very large percentage of processed foods are riddled with sugars, artificial flavours and preservatives that con your brain and tastebuds into wanting more of a substance that’s not real food that can help you but in reality limits your chances to live and actually harms you. At the end of the day, you and I have a choice to make….. please your tastebuds…. or help your body feel a little bit better, I know what my choice is..
Taking for granted.
At the end of each day I reflect on my progress and it appears that what I’m doing is working which as I’m sure you can understand is very pleasing, I previously mentioned that the line I write each day about testing my handwriting is becoming more readable each day. The porridge oats were stopped today, Tuesday so hopefully it’ll only take a few days to be out of my system and that will be reflected in a reduction in my daily weakness. There’s a good chance that they were the offending agent, I don’t expect a miraculous difference but I believe it’ll help move me in the right direction. I’m reasonably comfortable about the changes I’ve made in my diet and I know that me getting sick from the initial symptoms to the giving up work was close to seventeen years. The hideous squatter had a long time to damage and seriously contaminate the precious organs of my body, precious to me. So reversing that is not going to happen overnight, there’ll be bad and “not good days” in comparison to the good and great days, I just have to accept what’s happening and see all the up’s and downs as part of the journey, my healing journey and certainly not take this extremely special thing for granted, thank you Ann for saving our lives, R.I.P. and thank you Janet for sharing.
Acceptance.
It’s a strange thing really, Acceptance…. is it telling yourself that what you are trying to do, just can’t be done!!! To me that’s just giving up and telling everyone that you were wrong and what you genuinely believed to be true, wasn’t … Or….. or is telling yourself that what you honestly believed that you were doing the right thing but deep down you knew that you weren’t doing it right but kept lying to yourself that it was ok. Hmmmm…. let me think about that for a second… I’ve been on this program for almost two months and there’s no doubt I’ve had lots of little improvements, not necessarily obvious to anyone not living in my body but to me that does, the subtle changes are huge. The only significant issue as far as I’m concerned is the shocking weakness that happens everyday at roughly the same time, about four and a half hours after I get up and move around. I thought it was the protein or granola bar I ate daily so they were eliminated. I had slight improvements yes, but the midday weakness continued, so what could it be? Looking back I am fairly confident that a food that’s prohibited for the first three months has been a daily thing for me. Porridge oats, I thought, gluten free, coconut milk and Stevia, it’ll be fine, I’m doing everything else right but the midday weakness persists so I really cannot think it could be anything else. Okay…. acceptance, I’ve been lying to myself and that hurts… stupid… stupid boy, even worse, not a boy but a should know better 62 yr old man.
The decline of healthcare.
When I first moved to the U.S. in 2002 I felt good about my life and the decision I’d made, in hindsight I must have had rose tinted glasses permanently fixed to my head because all I could see was good. I’d met a woman who I thought actually loved me, I was moving to Colorado, living and working in the “mile high city”, that’s Denver and all was good in my life. Sadly two years later those glasses must have broken because that was the start of my MS life, four years after that the woman I thought loved me, didn’t as I learnt of her affairs. That’s by the by, I’m better off without her, back to my point… healthcare and its decline both here in the UK and back over in the U.S. At one time I thought it was only there that the problem existed but over the past five years I can see it’s just as bad here. Think about it, what do doctors do when you see them because of a health problem, nine times out of ten they just prescribe a drug, partly because they know that the drug will probably relieve the major symptom and partly just to pacify you. Most people are happy with this but in reality it’s just putting a sticking plaster a Bandaid on your head because of a headache, ridiculous and it gets worse. Look at the 91 side effects of Beta Interferon, Suicidal thoughts….. Suicidal thoughts, the symptoms of the disease are bad enough without the “so called medication” encouraging me to kill myself. Doctors should try their best, they took the Hippocratic oath… Do no harm…. how many people not just MS sufferers take 4 or 5 different medications that combined have 150 side effects, these are known because they actually happened to the 100 people that originally tested the drug before the FDA and UK equivalent passed the drug to be used by sick people. The healthcare industry should be renamed the Sickcare industry. It absolutely disgusts me how this is no longer an honourable profession, now it’s a Keep them sick and make profits industry.
Beta interferon
A neurologist wanted to put me on this, as I’ve said, I refused, at the time I didn’t know what I know now but I’m so, so lucky I stuck to my guns, this will shock you, the side effects are as follows:
More common
Black, tarry stools, chest pain, chills, cough, diarrhea, fever, flu-like symptoms, headache, joint pain, muscle aches, nausea, pain, painful or difficult urination, shortness of breath, sores, ulcers, or white spots on the lips or in the mouth, swollen glands, unusual bleeding or bruising, unusual tiredness or weakness
Less common
Abdominal or stomach pain, clumsiness or unsteadiness, convulsions (seizures), decreased hearing, difficulty with swallowing, dizziness, fainting, feeling of warmth,hives or itching, mood changes, especially with thoughts of suicide, muscle spasms, pain or discharge from the vagina, pelvic discomfort, aching, or heaviness, redness of the face, neck, arms, and occasionally, upper chest, redness, swelling, or tenderness at the injection site, runny or stuffy nose, skin lesions, sneezing, sore throat, speech problems, swelling of the face, lips, or eyelids, troubled breathing
Rare, Earache, general feeling of discomfort or illness, loss of appetite, painful blisters on trunk of the body, painful cold sores or blisters on the lips, nose, eyes, or genitals, Incidence not known, Bleeding gums, blood in the urine or stools, bloody nose, chest discomfort, confusion, constipation, dark urine, decreased urine output, depressed mood, dilated neck vein, dry skin and hair, extreme fatigue, fast, irregular, or pounding heartbeat, feeling cold, general tiredness and weakness, hair loss, heavier menstrual periods, high fever, irregular breathing, light-colored stools, loss of bladder control, mental depression, mood or other mental changes, muscle cramps and stiffness, nausea or vomiting, nervousness, pale skin, persistent loss of appetite, pinpoint red spots on the skin, puffiness or swelling of the eyelids, or around the eyes, face, lips, or tongue, redness, blistering, peeling, or loosening of the skin, sensitivity to heat, skin rash, slowed heartbeat, sudden loss of consciousness, sweating, swelling of the face, fingers, feet, or lower legs, swelling of the mouth or throat, tightness in the chest, tightness in the throat, upper right abdominal or stomach pain or tenderness, weight gain or loss, yellow eyes and skin
It truly amazes me that some people will simply take a drug and never do any personal research, people often get sick because of synthetic garbage masquerading as food, they then get sicker because of the side effects of drugs and there are 91 listed including suicidal thought..