Fight Back Fatigue

My name is Vix, 9 years ago I was diagnosed with Multiple Sclerosis (MS) 

Above, year one of diagnosis

When I was first diagnosed with Multiple Sclerosis (MS) in 2010 I was shocked and yet relieved to understand what had been happening to me for such a long time. 


At the time of my diagnosis, I knew very little about this potentially disabling disease. 

I thought I may have heard of it, but didn't believe it could be true! After all I thought people with MS were in wheelchairs! I certainly didn't need a wheelchair! I just needed to be able to see again in my right eye!


TREATMENT STARTED

2010 Steroids

I was told I would need to start different types of medication, the first and most important was a very high dose of steroids! And I would need these after every relapse. 

Above, steroids!

Relapses in MS is the occurence of new symptoms or worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function. 

Relapses can come out of the blue, and make life with MS unpredictable.

The steroids would hopefully help with my current relapse.

Above, steroids! Or what I like to call ‘Satans smarties’

Steroids made me feel really poorly! I was told that most people have a boost of energy when they have this high dose! 

I'm not most people! I could hardly stay awake, felt extremely weak, and was in agony with my stomach, joints, bones and skin! 

Steroids still affect me this way! 



2010 Disease modifying Therapies

The next medicine I needed are known as 'DMTs' (Disease modifying Therapies)

These were at the time injections that I had to do myself and were to reduce how many relapses I would have and how serious they were. 

The first & the second type of DMTs didn't work and made me very fatigued!

I kept relapsing, and at one stage it was every month! 

Every relapse needed steroids! Steroids just made me very sleepy! 

Above, managing to take a photo of myself while falling to sleep! Lol

2012 Tysabi Started

It was decided in October 2012 that I would start one of the better DMTs called Tysabri. So, every 28 days I go to hospital and spend half of the day hooked up to a drip! 



Above, 3 photos taken while having my Tysabri infusion 

Since I changed onto this new medication I have only had a few small sensory relapses. Which is brilliant, although each relapse takes more of me away and leaves me with more disability, no matter how big or small the relapse.

There are also major dangers that have to be considered and monitored when having Tysabri.


Above, This summer I have been monitored more more than ever before for a life threatening brain disease that can present as a result of taking Tysabri!

I also need very strong medicine for nerve pain associated with MS. 

All the medication that I take has fatigue as a side effect.

Above, Queen of Naps tee shirt that I should own!


I didn't know anything about MS fatigue before I was diagnosed! 

Above, year 7 of diagnosis

It didn't sound like anything to worry about! I mean, I knew what fatigue is, just tiredness right? Well yeah, if you don't have MS!

MS related fatigue is an invisible symptom. But fatigue can also be due to medication.


About 18 months after my MS diagnosis, I was diagnosed with Fibromyalgia! 

Fibromyalgia's main symptoms for me are pain and fatigue! 


It's always been a vicious circle for me with pain and fatigue. If my fatigue is controlled, then I can manage my pain better and vice versa. 


Managing my fatigue 

When first diagnosed, the medication I had for my MS related fatigue was enough to manage it, just! 

But since the years have passed, my MS fatigue has just gotten worse! To the point now where it is completely out of control! 

My cognitive function is really limited, word finding is so hard and concentrating is difficult! 

Writing this peace has taken me so long! In fact, I really wanted this Go Fund Me page to be live at the beginning of September and tomorrow is the third day of October! I just don't have the capability to write like I used to, which really affects my depression! 


“I feel like a social butterfly with its wings pinned down”

Being able to communicate and stay in touch with my friends and family is so hard for me to do, I very rarely speak to anyone now. Which makes my life very very lonely! 

Even staying in touch with friends on social media, I just don’t feel like I have the ability to do this. It makes me so sad. I miss all my friends! 

Above, 2015 when a group of friends joined me on my 5th year of diagnosis at the colour run Birmingham, where we raised money for MS-UK 

Above, 2011 when a very large group of friends joined me on my 1st year of diagnosis, to walk over the hot embers from this fire. Raising money for The MS Trust


Not just ‘cog-fog’
It's not just my cognitive function it affects though. My walking has gotten so bad, to the point that I have to use my mobility scooter nearly all the time. I have gone from having to use walking sticks, to needing more support from crutches and having to use them all the time indoors! 

Above, Always one for a giggle, on my scooter

Above, my first time properly using my scooter 2016


This is someone who has gone from being very active before diagnosis, to someone who struggles to even get up to go to the toilet! 

The amount of weight I have gained isn't surprising but is soul destroying and is affecting my depression every day! I can't even look at myself in the mirror now because I'm ashamed! 


“I was so concerned about my mobility, in case it was my MS progressing”

When I saw my MS consultant last November, he assured me it wasn't my MS, but was because of my fatigue. 


Yes, that's great news, but how do I sort the fatigue!? I need the medicine to help with the pain, and the side effects from those are fatigue. 

I tried Hyperbaric Oxygen Therapy in 2017/18 but as much as it helped to start with, all the travelling to and from and the time just sat in the machine, made my fatigue worse! I don't understand how sitting still can make my fatigue worse but it does! But what I do know is that just like MS, MS related fatigue is different for everybody. Like how one of my very good friends, her MS pain is easier to manage when she is in dry heat, where-as my MS pain and fatigue is out of control with any kind of heat!

Above, one of the hyperbaric oxygen tanks used at my local MS Therapy Centre


Something else that has helped me in the past… I used to exercise to help my fatigue (I know that sounds odd, but it worked!) Now, I can hardly stand for long without my legs buckling underneath me! I can't sit up-right for long without shaking and falling, unless I have a backrest! And I can’t walk far now either!

Above, when I had a go at ‘Fight Klub’ classes


It was only about 4 weeks ago that I started to consider the use of an electric wheelchair! A very scary thought, especially when my carer explained to me that, as soon as I started using a wheelchair all the time, then my core muscles will start to get weaker and eventually I won’t be able to stand on my own! 

I am so determined that this will not happen to me! Not for a long time, if ever! 


So, it’s mission ‘Fight back Fatigue’ 

I’ve stopped my medication that I was taking for my tremors, as I clearly remember how badly this affected my fatigue when I first took it. Stopping this medication has seemed to help, but I’m still struggling! 
Above, the tablets as was taking for tremors

I’ve looked into my sleeping pattern, having a snooze during the day (which I dislike!) and making sure I don’t sleep after 4pm. Sleeping at night, I am trying not to tax my brain an hour before I go to sleep, this means, no reading, no TV, no mobile phones, pc or other devices! This is so much harder than I thought! If I was able to get in and out of the bath and was ok with the humidity and heat from baths, then I think I would choose to do this before bed, but I can’t!

So I go to bed earlier than I want and listen to guided meditation, normally one that is specifically for sleeping. Often, I fall asleep before the meditation ends, which is great. If I sleep after 4pm then it takes me a really like time to fall asleep at night!


I had my Iron levels checked, I wasn't surprised when the results came back showing I am anaemic! 

I've been on iron tablets now for about 6 weeks and I really don't like them! 
Above, Iron tablets that I’m taking and really dislike! 

I won't go into too much detail because it isn't pleasant, but they clog me up so I have to take more medication to help me go to the toilet! 

What a wonderful life for a 38 year old lady! 


My MS nurse told me about a study that had been done, looking into how dark chocolate with a high cocoa content can help with Fatigue. The research says that as long as the cocoa content is over 75% then it will be rich in flavonoids. Flavonoids are known for their high antioxidant properties, it is believed that their influence on MS is because they reduce inflammation in the body.

So, for the last 6 weeks I have been having a small bar of 85% cocoa! I don’t know if it’s really helping, but who am I to say no to chocolate! Even if it does strip your mouth of saliva because it’s so bitter, lol. 

Above, my morning coffee and 85% dark chocolate 


Neurological Physiotherapist 
Ever since my MS diagnosis I have been seen by the Neurological Physiotherapist at my local hospital. 
I contacted her recently when my walking got worse, and my core muscles got weaker.
She gave me exercises to strengthen my legs and core muscles, but I have to be very mindful when I do them, so I don’t make my fatigue worse! 


‘Airnergy’
Another thing I have been trying for the last 2 & 1/2 weeks, I’ve been trying something called ‘Airnergy’ 

It's a machine that creates energised air which is supposed to feed every cell in the body with oxygen. This can boost energy levels, boost the immune system and stimulate circulation.


And I think its working! Even friends and family have said how they've noticed a big change in my energy levels and state of mind! 

Above, the ‘Airnergy’ machine

Here's the thing though & this is the reason for this epic piece I'm writing…

To hire the machine it costs £150 a month! 

To buy a brand new machine, the same as the one I have been using would cost £4657 

A second hand machine would cost over £3000!


It's a massive ask, but I'd love nothing more than to be able to continue using this therapy!

It's simple really, I can't afford it! 

I've been fortunate to be able to hire it for a month to try, but I only have it for another nine days, then it has to go back! 


Since I've been trialling this therapy, I can feel the difference! I feel happier and even though I’m not back to my full positive state of mind, I’m getting there! 


I’ve even managed to get back to my old Pilates class, albeit on a chair and not on the mat, but I’m back there, in the room with all my friends. My teacher Lisa ‘Pilates’ Perry, helps me with adapted exercises, my carer ‘Steph’ also helps me while I’m there, but most importantly, she helps me get there! 

Above, Lisa ‘Pilates’ Perry, my Pilates teacher and very good friend

Steph arrives at my bungalow 4 days a week, 7 hours a day, and helps me to shower, wash my hair, dry me and helps me to get dressed! She helps me with my medication, takes me to medical appointments, exercise classes, Physiotherapy, Chiropody. Steph also helps me with lunch, helps prepare evening meals and assists me to stay on top of my house chores! The list is endless when it comes to what Steph helps me with! Without her I would be totally lost! 
Above, my carer ‘Steph’ the larger, more to love, me!

I also have ladies at the weekend for 4 hours, 2 ladies that work alternative weekends and also help with personal care.

Then there’s the ladies that cover for when Steph is on holiday or for emergency cover.
In total, I now have 6 people who help me!


PIP (Personal Independence Payment) is replacing my DLA (Disability Living Allowance)
The reason I am writing about my carers is because I have recently had to apply for PIP (Personal Independence Payment) This is replacing my DLA (Disability Living Allowance) and is money for people who have extra care needs or mobility needs (difficulty getting around) as a result of a disability. 

I have been in receipt of DLA since I was diagnosed back in 2010, everybody who gets it had to apply for PIP. Which is what I did back at the end of Spring. 

Personally, I don’t agree with the system! It doesn’t make sense to me why someone with a chronic disease which there is no cure for, would even need to apply. But I still did it! I completed the forms with the help of my partner and Steph my carer, I sent the forms off and waited for what seemed like a lifetime! 

Eventually I received my reply! It was nearly all good news! I had been granted my full mobility, that’s so I can still receive my car! Brilliant news!
But… as I continued to read, I saw that they had decreased the amount of the care component I get! That means I no longer receive the full amount of money for my care! Or what they now call ‘daily living’ This is the money that I use to be able to pay for my carers! So yeah, I can keep my car, but I’ll have no one to drive it! No one to be able to help me stay clean, or to help me with my food! Also, they have said that I don’t need support with medication, even though I have to go to hospital every 28 days where a nurse assists in administering medication. My local chemist assist me by putting my tablets in blister packs every month! 

You can imagine the amount of stress this has created! Did I mention stress is my biggest trigger for an MS relapse & my most recent relapse was in June! 

I am appealing this decision but it is going to take a long time! 


So, I go back to what I said earlier, this is a massive ask! Whether it’s placebo or not, I really feel the benefit from this machine! I’ve only been using it for 3 weeks and the difference for me is amazing! 
I don’t want to loose this feeling, I want to be able to continue to communicate better with people! I want to be able to do the exercises my Neuro Physiotherapist has given me, to strengthen my core muscles and my legs! I want to be able to think clearer! I want to continue going to the Pilates class!
I really believe this will only be possible if I am able to continue using the machine!

Above, me using the Airnergy machine