I know the saying ‘no rain, no flowers’ means without rain there can not be any flowers but today I feel like I didn’t get either. I didn’t get flowers or rain, I got nothing. My long-awaited neurologist appointment was today and he said that it is unlikely I have MS. He said he didn’t think there was any need for an MRI if I was happy enough to trust him, which I am, because he’s a neurologist! He said my nervous system isn’t working correctly but it isn’t a neurological problem. He did refer me to a website: http://www.neurosymptoms.org which is very interesting but A LOT to take in- here is the introduction to it:
How to use this website …
This website is about symptoms which are: • neurological (such as weakness, numbness or blackouts) • REAL (and not imagined) • and due to a PROBLEM with the FUNCTIONING of the nervous system, and NOT due to neurological disease. These symptoms have many names (including dissociative symptoms and conversion symptoms) but are often described as “functional symptoms” or “functional disorders” Symptoms like these are surprisingly common but can be difficult for patients and health professionals to understand. This website, written by a neurologist with a special interest in these problems, aims to give you a better understanding of these symptoms. It has no advertising and does not make any money for the author.
Obviously I am relieved I don’t have MS or any neurological problems but I am also deflated in that I was looking forward to having some answers- some validation even on my symptoms, now I feel like maybe I am just crazy- which is not a nice feeling. A ‘crazy attention seeking time waster’ is how I feel right now. I am trying to be positive- I DON’T HAVE MS! how can I not be HAPPY? – I know everyone with MS most likely wishes they didn’t have MS so I am grateful, for my babies, I am so glad. Now I just have to look deeper into myself and see how to fix these annoying symptoms. I need to get a grip of my anxiety as the Dr said it could be a factor. How do I do that??
I need an action plan.
My action plan is:
Complete 80 day obsession (A Beachbody program)
Meditate 3 times a week
Bath in magnesium at least once a week
Keep a diary about food, stress, symptoms.
Continue Gluten free, Dairy free and Sugar Free and lean more towards vegetarianism (now that I don’t have MS I don’t need to follow the Wahls protocol so strictly and you can’t be vegetarian on that)
Continue with my supplements and investing in some CBD oil- to help with my sleep.
I also need to work out a timetable and try to stick to it as much as possible because I need trained. I need a schedule. My head needs some clarity and structure to guide me through the fog.
I still plan on writing this blog as it is about my journey to health and becoming soul strong. I didn’t get any answers today but I will keep searching.
I wish I had someone to talk to through all of this. I don’t mean that in a melancholic way. I think I just need another me so I can get out of my own head sometimes but stay in my own head!! I really want to thrash out everything that is going through my head and hear some objective opinions. No one really wants to talk about it. Everyone is so sure (but not sure) that I don’t have MS they make me feel ridiculous, like I am imagining everything. My friends don’t ask questions and they change the subject if I try to bring it up. My husband does listen but he honestly has enough to worry about with work and his masters and being a dad and being a husband. I still haven’t told my parents. I KNOW! I just couldn’t do it to them. I was waiting until after Christmas, then after New Years then I just couldn’t do it. But I am getting tired of living this ‘double life’, it is stressful and I don’t need anymore stress but I don’t want to hurt them. Not that I could talk to them about it because I know they would be telling me there is nothing wrong with me or treating it like it is a death sentence. My brothers don’t ask. I know everyone has their own lives and their own struggles. I suppose that is what this blog is all about. Getting it out there and trying to organise it or make sense of it, if there is any sense to be made!
One of the groups I am in on Facebook asked us what our word for 2018 was going to be and it took me a good week to come up with the perfect word. STRONG. My word had to be STRONG.
stronger (comparative adjective) · strongest (superlative adjective)
having the power to move heavy weights or perform other physically demanding tasks:
I need to be every one of these synonyms! From fighting-fit to passionate to forceful to knowledgeable! I need to be STRONG.
Strong in my Physical health.
Strong in my Heart
Strong in my Gut
Strong in my Mind
Strong enough to look after everyone else and Strong enough to look after myself.
Strong enough to stand up for myself
A lot of people think I am weak, because I cry at EVERYTHING. I have been called weak many times.
I am not crying because I am weak. I am crying because I FEEL everything yet I still have the strength to go on. I am STRONG.
When I went to Mass on a Sunday as a child. I would look around and most Sundays I would see someone with so much sadness in their eyes that I would cry too. It never left me. I still see it. I still feel it. I still cry. I am strong. 2018 is my year to show everyone how STRONG I am .
The neurologists appointment is this MONDAY! And I have decided to expect NOTHING from this appointment. The neurologist isn’t going to say definitively ‘yes, you have MS’ ‘No, you don’t have MS- scoot!’ I will most likely be told I need an MRI and or a Lumbar Puncture and I don’t even know if I want to go down that route. Firstly I am a little claustrophobic (I was locked in a boot/trunk of a car when I was younger during a game of hide and seek and they forgot about me- I was there for hours, only released when the driver heard my crying before taking off) I had planned on asking my GP for something to help with the MRI on the day but now the more I read about MRI’s and Gadolinium poisoning the less I want something put into my brain. This is from Ashton Embry (Father of Matt Embry of MS Hope)
“Gadolinium and MS – Most neurologists routinely prescribe annual MRI scans for their MS patients which include a gadolinium-based dye. The main reason the dye is used is to identify active lesions in which blood is passing through the blood-brain barrier (BBB) into the central nervous system (CNS). One of the main motivations behind such scans is to use them to persuade (scare) their patients to use a drug or to move onto a more powerful (toxic) drug with a bigger price tag.
In the summer of 2015, I posted a warning that gadolinium can accumulate in the brain following repetitive scans and potentially cause additional problems in the CNS. Notably the US Food and Drug Agency has recently issued a report (https://www.fda.gov/Drugs/DrugSafety/ucm589213.htm) that gadolinium (Gd) does indeed accumulate in the brain after a number of scans. It is still not known what problems are caused by the retention of Gd but one has to assume a build-up of a toxic heavy metal in the brain is not a good thing.
I doubt if the neurologists will discontinue, or even substantially lessen, the use of Gd-based dyes given their great value for additional drug sales. I suggest PwMS strongly question why their neurologist is using such a potentially-harmful technique to identify disease activity when physical exams are obviously the best way to determine if progression is occurring. Furthermore, if progression is occurring, I would hope that the person would seriously look at nutritional strategies to slow or halt such progression (see MSHope.com and Terrywahls.com). I can only emphasize there is no solid evidence the drugs recommended by the neurologist affect long term progression (the real disease).”
I’ve since read lots of messages from people who have had only 2 MRI’s and Gadolinium is at a crazy high level in their brain- so no, I don’t want that. If I must have an MRI, I would like it without Gadolinium.
Then there is the whole problem with seeking out a diagnosis. It will most likely take years. If I do get diagnosed with MS, I know I will just get meds pushed at me, meds which treat the symptom not the disease. Professionals who are bank-rolled by pharmaceutical companies or who have been trained to do so (by people bank-rolled by pharmaceutical companies)- will be telling me what to take and I will doubt my own instincts because they are professionals and I am not. I do know that since I started investigating my gut health- my symptoms have appeased. Now I don’t have the numbness- everywhere- everyday. Before I started this I would have numbness in my hands and feet every single day- for hours. Now I do have the occasional tingling but nothing like it was. AND I am just beginning!! AND I’m not even doing it completely correctly, I do sneak in the odd chocolate! Imagine if I was 100% strict.
So, maybe I decide I don’t want a diagnosis (until I get a big flair up perhaps) Am I content enough to live in LIMBO- not having an answer? Hi, I’m Gail and I might have MS. Could I cope with that?
New Year, New You! The slogan that is everywhere at the minute- but you know what? You don’t need a New You! Don’t buy into it. I do need a few ‘new’ changes but that is about GROWTH, not becoming a new person. I hope to develop a few NEW habits.
My first ‘New Habit’ is to get up at 5:30am and start my life. It was supposed to happen this morning but both our girls had the most restless night EVER- The Christmas comedown for kids, so I was not fit to get up at 5:30am this morning. I didn’t fail- I just need to try again! When I do get up at 5:30am and the girls are still asleep- I intend on working out to my beachbody program and then just sitting in silence over a mug of tea. Mentally preparing myself for the day ahead. What might happen is I fall asleep on the sofa- I know for sure that this habit is not going to be an easy one for me to develop- but I’ll try. I will become a fully-fledged member of the 5:30am club. (Hold me accountable- I’ll see you at 5:30am tomorrow morning)
The second NEW habit- is to workout (which is linked to my first habit) I have also signed up to a 10k which takes place in April. I realise one of my symptoms is tiredness but I will do my best. Some days I have boundless energy (I think I had one of those days in the last year) most I days walk up the stairs and I feel drained but reading the Wahls protocol- I need to get moving! ‘Your brain and your body need you to use your muscles and move, even if you have a degenerative disease. Exercise is important to maintaining the proper balance of hormones in the brain and in the body. It also keeps muscles from atrophing’ Taken from The Wahls Protocol by Terry Wahls, M.D. I will be a Wahls Warrior which leads me to my next New Habit
My third New Habit is to STOP WORRYING- This will be the hardest for me as I am constantly worrying. Ringing in the New Year and everyone is so hopeful and in my head I’m thinking- It is too late, Our planet has doomed, What have I brought my girls into? What sort of lives will they have? Threat of war, Over Population (I added 2 to this problem) POLLUTION, Climate Change, Artificial intelligence, now there’s some Aussie Flu making its way through Ireland killing people!! So- STOP and breathe- turn away from the media and realise the media is a fear factory. I need to live in the PRESENT, enjoy my girls today, in this moment, and stop worrying. STOP WORRYING. It is all beyond my control so why worry. LIVE IN THE MOMENT. (obviously I am using less plastic and trying to help as much as I can with climate change and pollution) but everything else? I can’t worry.
2018 will see me become a WARRIOR not a worrier.
I changed the tagline on my page- it was something like- is multiple sclerosis looming?- but I was never happy with that- for many reasons, one being- if multiple sclerosis is looming, it shouldn’t define me- it really shouldn’t define me before I am even diagnosed! So now it reads- ‘Becoming soul strong’ I think I am happy with this. What am I doing to be ‘Soul Strong’?
- I am learning to not judge- sometimes I have fleeting ‘judgey’ type thoughts but I immediately scold myself- then I judge myself. So to be ‘Soul Strong’ I need to judge less- even myself. People are deep- we only get to see what they show us on the surface- even someone who seems so full of hate- there could be, most likely is a deep pain or a fear, hate comes from fear- that we can’t see- we don’t know where their hate is born of, so don’t judge- accept and show love. The love you show could ease a little pain- Love can change the world.
- Let go- Let go, Let go, LET IT GO! As much as I tell myself I’m over stuff- I know I am not. Rejection- I was rejected in a BIG way by people who were family- my best friends and it hurt me- a lot- I went through the motions- trying to be friends with them, wondering why they hated me now? What did I do? What was wrong with me? and now I do accept (do I? totally?) that maybe it wasn’t my fault after all, their rejection of me is not a reflection of me. But it still hurts, we all swore we would be each others bridesmaids so when they got married, I wondered did they even think of me. Have they cut me out of all the photos they have with me in them? are there 100’s of photos with my face crossed out!! Their rejection of me- helped shape me- maybe even had something to do with the eating disorders (not blaming them because I made those decisions- There were many factors and the eating problems started waaaay before their ultimate rejection of me) I am a better person because of it. I believe this. The pain they caused made me strong- stronger than people give me credit for- just because I cry doesn’t mean I am weak! Part of me will always hope for that big happy reunion but I see they are too full of hate and that it will never happen. Hate has consumed them. I wouldn’t wish that on anyone. I could’ve gone down that route but instead I chose LOVE- every time I choose LOVE. It was not the first time or the last time I have been/will be rejected. I need to let go of being rejected and not take it so personally. Again- their rejection of me is not a reflection of me… keep saying that over and over!