Invisible Symptoms – Living with MS and Chronic Headache

Living With MS and Chronic Headache – Invisible Symptoms

My Symptoms

When people meet me they often comment how well I look. This is often the case for people who are living with MS, or headaches. There is nothing that you can see that gives you an idea of what I am feeling on any given day. You cannot see that my leg is heavy until I start to walk (MS symptom). People cannot see that I am losing the sensation in my hands, or that everything feels like sandpaper (MS symptoms), or they cannot see that my head feels like it is just about to explode, with some invisible bomb (Whiplash symptom). I have many invisible symptoms that I wish I could show so that people could somehow understand how I feel. These are my symptoms of living with MS and Chronic Headache.

Impact on my life – concentration (whiplash headache)

As a result of the car crash that I was in 3 years ago, I have constant headaches. Every day I start with a headache (pain scale: 5/10), and depending on my level of activity (mental or physical) it can climb to a 7/10-8/10. The work that I used to do before the accident was usually using my brain. I was usually in a leadership position, and/or working on accounting/legal projects. My ability was to solve problems, and this required concentration. Often, for long periods.
Now I can only concentrate for 30 minutes at a time, and the quality of this concentration is poor. For example, to write a post for this blog can take me several hours, because I just cannot get a flow. So, I take my time. Take frequent breaks, and eventually, I have a post. The most important thing is that I am doing something, and I have when I am finished, something to show for my effort. This is very important for my well-being.

Impact on my life – mobility (multiple sclerosis)

Now I need a stick to walk, as my right leg can get heavy, or my ankle doesn’t work as well as it should. My mobility can change depending on the weather. Anyone who knows Ireland, and particularly the West of Ireland know that we have lots of weather. In 10 minutes the temperature can vary 5C ( 9F), it can rain, be sunny, and even on an exceptional day snow!! The biggest impact on me is the temperature. I was doing a survey at the Galway Arts Festival. It was a beautiful day, and then suddenly a thunderstorm arrived. The temperature dropped, and the heavens opened. Flooding everywhere. This sudden drop in temperature meant that my leg decided that it was not going to work anymore. I think it wanted to go back to bed!

The impact on me was that I now could move slowly to my next location. That wasn’t a total disaster.

Living With MS and Chronic Headache

I have adapted my life so that I can live with MS and chronic headaches. This has involved a change in my life of the type of work that I do. The choice I faced was either to rebel against my constraints or, as I decided, to work within them. I am happy with the job that I am doing, and I am trying to be the best market research surveyor that I can be!!

The Choice – Pain, or possibly more pain??

So what should I do? I am faced with a choice, and I know that I have to get some more information, but a decision is looming.

Up to 3 years ago I was virtually symptom-free of my MS. I had been using LDN (Low Dose Naltrexone) for 10 years and all my symptoms had either reduced or disappeared. I was like everyone else. Fantastic, I was very happy.

Then I was in a minor car accident, but I did hear a loud crack in my neck. I seemed fine for the rest of that day, but the following day I had a headache. Then peripheral pain and numbness in both arms. Now I have, as a result of the trauma in the accident, all my old MS symptoms back (heavy leg – causing walking problems, numb hands and face, and fatigue), plus I have a headache that doesn’t disappear that has a pain level of 5/10. It does reach 8/10 in spikes during the day, and gets worse with activity and concentration.

So my pain specialist is suggesting a course of treatment that I am worried about. Today I spoke with my GP, and I think I have been able to clarify my thoughts. But it is frightening. Do I stay with my current level of pain, and do some work that I can do, or do I follow a treatment program that MAY make the pain worse. It could be a success, and I would have no headache, or maybe less of a headache. I also have to consider my MS. Could I get a flare up or relapse of my MS, and as a result get some new symptom. One that I do not know the impact of on me, physically and/or mentally. Scary.

This isn’t a straight forward if I do this, then this other thing will happen. It is more complex and entails risk. The risk of failure could be devastating. At the moment I have a decent routine. I have limits, but I know what they are, and I have learned to live within these. Occasionally I push these limits and pay a temporary price. The great thing is that it is temporary. I will recover. This procedure may not be that simple.

I have a few key questions that I will be asking my pain specialist, and, depending on the answers, I will make a choice. A choice that I will have to live with the consequences of, for the rest of my life. Tricky. In another few weeks, I will make this decision.

Wish me luck, I will need it!!

Living With MS – Accepting the Challenge

Living with MS – Accepting the Challenge

My first week blogging, and I have been excited, and a little overwhelmed, by the response to one of my posts. I did not expect this reaction.
I don’t like that I have MS, or that I have a continuous migraine-like headache. I would never choose this, and at times I get very angry, frustrated, and sad that these are part of my life. By nature, I am a positive person. So I choose to concentrate on what I can control.
Control over something doesn’t mean that it will be easy. In fact, I find that usually if I have control over an aspect of my life, to make the decision to control it can mean that I have to overcome some fear or anxiety.
For example, during the week I was early for an appointment. The place that I had the appointment was on a steep hill, about one-third of the way up the hill. I don’t like hills. They take a lot of effort, as my right leg does not go as quick as my left leg. It is slow and heavy, and I have to really concentrate to get it to do what I want. Now, I had a choice, stay in the car, or explore. I chose to explore and walk to the top of the hill. I figured the exercise would be good, and that some fresh air in my lungs would also be positive.
With my stick in my right hand, I faced my Everest. Or at least a very small Everest. Step by step I went up the hill. Sweat was dripping down my back, and my head was pounding. I was determined not to let ‘a hill’ be my nemesis. When I got to the top there was a sitting area surrounding a standing stone. Very surprising, and welcome. I walked towards the back of the area and sat down. Took a breath, and looked up.
Wow, what a view. Totally unexpected, and dramatic. I could see for miles. I took a picture, but it doesn’t really give the total effect. I was delighted, and it was well worth the effort.

Diet and MS

I saw on my Twitter feed a post about how people with MS have less taste and smell compared with non-MS’ers. I checked out the post and loved the suggestion that you add colour, texture and extra spices and herbs to give your meal an extra zing. Kind of a compensation for not being able to taste properly. (This is the post) I was surprised, and dismayed, that number 4 on the list was to add MSG (monosodium glutamate) to your meal as a flavour enhancer.

We have MS, a chronic disease where our bodies are attacking us. They are advising that we add a chemical to our meal, instead of all natural food. Totally crazy. Since I have been diagnosed there have been many different diets suggested, from the Swank diet to Terry Wahls diet. They all have the common thread of no additives and only eat unprocessed food. NO CHEMICALS. Shameful that this is on the internet.

During the week I did find a very tasty recipe for a vegetarian paella. (Here is the recipe). I used turmeric instead of saffron to give that special yellow colour. I couldn’t find artichoke hearts, so I used green beans and asparagus. I was very happy with the result.

In the frying pan before serving

Vegetarian Paella on the plate

The Morning Challenge – Choose Living, or Choose to Succumb

I don’t want to succumb

This morning I woke at 7:45. A little earlier than usual. On Saturdays I like to sleep in, and catch up on some rest. One of the symptoms that I have with my Multiple Sclerosis is fatigue. For those of you who don’t have fatigue is is very hard to understand. When I wake up, it is as if I never slept. My limbs are heavy, and I wonder how I will get out of bed. Some mornings I just want to lie there forever. I want to give in. 

This morning I felt like just giving in, and sleeping all day. However, I cannot just turn over, and return to a restful slumber, because as soon as I wake up my headache asserts itself. The right side of my head throbs. Pulsing with a rhythm that cannot be ignored. It stops me from sleeping, and enjoying the laziness of the morning. I have to act, otherwise the pain becomes unbearable.

So, now I have to distract myself. I am sleepy, no energy, but I have to act. So I start to read. I play a game on my iPad. I have to dart from one activity to another, trying to find something that doesn’t involve concentration. If I have to concentrate, my headache will escalate from a 5/10 to a 7/10. I don’t want to start a day like that. 

This is what I do when I feel like giving up. I bootstrap myself. Step by step. I accept the pain, because for me that means living. 

No Pain = Drugs

Drugs = Sedation

Sedation = Giving Up

I will not allow my disabilities to rob me of life. I choose to live my life actively. This is my choice.

A Day in my Life

What I will tell you

In this post, I would like to tell you about my daily routine. When you have a disease like Multiple Sclerosis, combined with piercing headaches, you need to have the sense that you have control over your life, despite the obvious fact that there are elements of your life that you have no control of. Asserting control over my diet, certain elements of my day, and taking the time to cleanse my mind, and prepare for my day, are all methods that I use to have control over my life. I believe that these routines are important for people with chronic illnesses, and are also important for people who have no illnesses but are looking to get their lives back in shape. All it takes is to start. It can be just the simple act of making your bed. Now you have control.

What I am telling you

I try to have variety in my days. This, for me, is good, as I don’t like to do the same thing again, and again. That feeling of Groundhog Day would put me into a negative spin. My aim, every day, is to do something positive. This is not always possible, but I do have some tricks that make sure that I have some successes every day.

Repeating Routine

Every day I have some elements that I repeat. These are:

  1. Breakfast 
  2. Make bed 
  3. Meditate 
  4. Journal 
  5. Dinner 
  6. Play a game/Relax 
  7. Sleep

Breakfast

After I have at least 8 hours sleep I wake up gently. I have found that if I rush in the morning that my headache gets worse, quicker. It may take 20-30 before I get out of bed. This time I use to read. It could be my book that I am reading, or check on the news. I won’t read something heavy, as my brain has not engaged yet.

Then I have breakfast. I have experimented with different breakfasts, but my reliable, and favourite breakfast is:

  • Muesli 
  • Orange Juice 
  • Coffee (strong, made from ground coffee, never instant) 
  • Vitamins (Vitamin B-Complex, Vitamin C, Multi-vitamin, Vitamin D, Gensing, Evening Primrose Oil, Fish Oil) 

I find this works well for me and gives me the boost for the day that I need. Maybe 3 times a week I will make a Bulletproof Coffee. I probably should have this every day, but it does take more effort, and I am sometimes lazy.

Make Bed

This is an important step in my day. Firstly, I like to be tidy. I do allow the bed to breathe a little while I am having breakfast. When I return to my room after breakfast, I finish making my bed. It isn’t complicated, as I only have a duvet, and throw. However, I do think that by starting the day with a success, however small, means that every day I will have succeeded in something, and will have done that something well.
 

I had been doing this all my life, but now I know the reason.

Meditate

This takes about 15 minutes every morning and clears my mind for the day ahead. I only started this recently, on advice from a psychologist, and after listening to “The Tim Ferriss Podcast”. It is also mentioned in his book “Tools of Titans”.

Journal

After clearing my head with about 15 minutes of meditation I then write my journal. It consists of two parts. The first is a 5-minute journal. This is the blank version of the 5-minute journal:

5-Minute Journal

After this, I write about what I did yesterday, and then what I plan to achieve today.

Dinner

Every day I have a sit-down dinner that I have with my partner. There is no TV, no radio, no phones or the Internet. I believe that it is very important to have at least 1 meal a day that you share with someone, and that your complete attention is with them, and the meal. Later in this blog, I will write about my diet.

Relax/Play

Every day I have some time that I relax or play. I think that playing games are very important to everyone’s mental health. At the moment the game that I am playing is Rummy. It has an element of skill, and luck. The most important thing is that I am playing with someone that is important to me. We can chat, talk, even talk about serious things. The key issue is that it is social.

Sleep

8 hours sleep every night is a minimum for me. Due to the fatigue that I have with my Multiple Sclerosis, and Headaches, it is important that my body has the time to heal itself without being interrupted by the events of life. It is critical for mental health, and physical health, that sufficient sleep is part of my routine.

What I Told You

In this post I have walked you through the parts of my day that I assert my control. As a person who has Multiple Sclerosis, and Chronic Headaches, I need to have the feeling that I control my own destiny, and that the illnesses I have are not the guiding hands. I have the control over some of my day. Whether it is by making my bed, or taking the time to meditate and cleanse my mind before the day starts. It might seems small, but these are steps that help give me balance in my life. I have to take control of the things that I can control, and actively control them. Then, when life throws you a curve ball, you can handle it. You have the mental strength to overcome these obstacles.

A 30-Minute Life?

What a strange name for a blog. It is strange, and initially, hard to understand, but I will try to explain. I have a few medical issues in my life. They are:

  • Multiple Sclerosis
  • Sarcoidosis
  • Asthma
  • Chronic Headaches
Multiple Sclerosis has been part of my life for 25 years. At the start of my illness I had numb heels. I noticed this when I returned to Ireland from London for my graduation from University. When I returned to London I went to the doctor. I was very fortunate that the doctor I went to had MS too. She referred me to a Neurologist in Queen’s Square, London, and within 4 months of getting my first symptoms I was diagnosed with relapsing remitting MS. That could be a world record for diagnosis of MS, as it can sometimes take years.
At that time there was no treatment for MS. The only recommendation was for me to get on with my life, and to take Evening Primrose Oil, which I am still taking today. My illness did progress, and after a year I had to quit me job. I didn’t have the energy to do it. Fatigue was bad, and my mobility had become worse. Particularly my right leg. It was heavy. Like walking in water. My left leg was perfect, with no issues. It reminds me of the Peter Cook and Dudley Moore sketch about the one legged actor who wanted to play Tarzan. (Tarzan Sketch)
On returning to Ireland, and my parents, I took a few months to rest, and then I started a small shop selling giftware to tourists visiting Connemara. Family, friends and acquaintances helped me, and gradually I carved out a new life for myself.

Now

Fast forward 21 years to July 2014. I had been living MS symptom free for nearly 10 years. I had been told about an amazing drug, Low Dose Naltrexone (Listen to an interview I did with Mary Bradley about my journey). This drug managed to stop my MS, and I had no more symptoms. Amazing. On the 18 July 2014 I was in a minor car accident. I was stopped in traffic, and someone crashed into the back of my car. I heard a loud crack in my neck. I was a little dazed at the time, and shook my head. I got out of the car, and inspected the damage. Exchanged detail with the person who crashed into me and headed home. I was again living with my parents, helping my Dad look after my Mom, who was ill. The next day I started with a headache, pains down my arms, amongst other things. since that day I have not had a single day without a headache. Not one. Not even for a minute.
My headache starts the day at a 5/10. Never less than that. Depending on the level of my activity it can sometimes get to an 8/10. I have regular spikes in my headache that cause me to flinch away from the pain, which is usually on the right side of my head. My symptoms describe a migraine headache. I have tried many medicines, and the only ones that do reduce the pain a little, also cause me to be sedated.
I have made a choice to stay with pain, and avoid sedation. I have had to find ways to control my reaction to this pain, and this blog will be describing what I have tried, and what I am still doing.

A 30 Minute Life

This headache has had the impact that I cannot concentrate on something for longer that 30 minutes. Sometimes it is 20, and other times it is 40 minutes. The average is 30 minutes. After this time the pain reaches a level that I lose focus, and have to rest, distract myself, or meditate to reduce the pain. When it reduces sufficiently I can return to what I was doing. My goal is to find something that I can do in my life that gives me personal satisfaction, and that I can earn a good living. At the moment I am doing market research. I am one of those people that knocks on your door and asks for 15 minutes of your time. This suits me perfectly at the moment. I usually get a break between surveys, which helps prevent my headache getting to bad.
The whiplash injury has caused some inflammation in my body, and this has caused my MS symptoms to return. I have not had a relapse, but the scarring in my nervous system have become active again. As a result I now have a heavy right leg, and my fatigue has returned. This has meant that I am using a walking stick again, as my right foot has a tendency to drag. This could cause me to trip, which would not be nice.

Who is Robert Joyce?

Hi Everyone

Thank you for checking out my blog. I hope there will be some content that you will find of benefit to you. I would like to give you some background on who I am.

Background

I am 48 years old (born in 1969) and live in Connemara, Ireland. It is a beautiful part of the world, with an amazing landscape. It does have one draw back, and that is the rain. It is a very wet part of Europe, with grey skies, and lots of puddles. At this stage of my life, I don’t really notice it that much, as I have the clothes that suit this environment. Rain coats, and shoes that are waterproof are essential.

When I was 23 I was diagnosed with Multiple Sclerosis. It is the relapsing/remitting version of the illness, and it was a big obstacle in my work at the time. I had chronic fatigue, walking felt like I had one leg in a river, and my sensation had gone in my legs. It was a scary time of my life, and I was working in a new job, in London. After several months I realised that I could not continue with the pace of life that the work required. At this point I returned home, to recover, and to find some alternative way of living. My parents were very supportive and helped me start a new life.

Since then I have done many things. I have two beautiful children, and I am very proud of how much they have achieved so far in their lives. I have owned several businesses, operated as a business consultant, and was the head of a sporting organisation in Ireland. I have done business in Ireland, USA, UK, Norway, Spain, Turkey and Switzerland. All these experiences have made me who I am today.

Now

Three years ago, July 2014, I was in a minor car crash. My car was stopped, and someone hit me from behind. When the accident happened, I heard a loud crack from my neck. I shook it off and went to talk with the driver of the car that crashed into me. We exchanged details, and I drove home, thinking nothing of what happened. However, I then started to experience different symptoms. A headache, pain in my arms, light headedness, to name a few of the things I felt. Little did I know that three years later I would still have that same headache, that my MS, which had been in effective remission for nearly a decade, would return and that my life would have to be lived in 30-minute blocks. What a big change of life.

What Now?

This blog will be tracking my journey to recovery, and I will also use it to share the strategies that I am using, or experimenting with, to bring my life into a phase that will give me an acceptable life. My life will have pain, I am not sure that I will be able to completely escape from that, and the symptoms of my MS. This does not mean that I have to have a bad life. For me, finding a solution to this problem will be my goal. Maybe you can join me on this journey?