Catch me when I fall

Having found this video on a group that I am a member of for women with MS, words cannot begin to describe how much admiration I have for this brave young girl. To see someone have such a strong passion for something, where they are determined not to let the MonSter control their life is beyond fantastic. It is also so inspiring to see Kayla’s coach provide so much support and encouragement to what she does.

Just because you have a disability, this should not define whether or not you can achieve your goals and Kayla is a perfect example of this. Stephanie Millward is another athlete who does not let MS get the better of her and she is a swimmer for the Paralympic games.

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Yes both Stephanie and Kayla look like normal and healthy young women to the naked eye, but they are also fighting the unfortunately all too common battle of invisible illnesses. Despite this, they have both achieved so much and prove that nothing is impossible with the right drive and determination. They may have to adapt the way they train or even compete at different levels, but they still give absolutely everything they have into their passion. If you have the right support around you, anything is possible and you should never give up.

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Have you achieved goals you didn’t think were possible? Who inspires you? Let me know in the comments 🙂

Relapsing with a gangster limp

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‘Ouch, that really hurts!’ I whinged to my Mum on the phone whilst walking home from work. After a good appraisal with my new team leader at work, I was calling home to have a catch up on everything that had been going on. However, I couldn’t ignore the electric shock sensations going through my left leg, as I was crossing the road and the pain it was causing me. My mum and I, hadn’t put it down to anything in particular apart from maybe being sat awkwardly at work and I felt personally that it was a sign that I had been pretty slack with my fitness as of recent!

When old symptoms returned on a lower level over the last few weeks, I didn’t think much off it and just decided to shake it off and carry on. For instance, the MS hug decided to be not so romantic and instead crippled me when I was trying to focus on my work. This wasn’t as intense as when I first had it and I didn’t think too much of it. Over the course of 3 weeks, more symptoms were appearing and when it got to the point that my left leg was getting painful shock sensations and numbness; it was time to contact my MS nurse and see what was going on.

By this point, the symptoms were affecting my daily activities on a much larger level. The numbness in my leg had progressed to what I call, a ‘gangster style’ limp and my cognitive thinking and vision was beyond awful. I couldn’t read what I was doing at work and I couldn’t problem solve either. My MS nurse organised for a home visit the following day and for me to see the GP on a same day appointment to see what was going on. After carrying out neurological exams on my legs and vision, he advised that this would be deemed as a relapse in my MS. I had returning of old symptoms and the presence of new symptoms. Where it had impacted on my walking and general day to day activities, it was advised that I should treat this with high dosage steroids. This is taken as oral medication on a 5 day course and I have been signed off work for 2 weeks, maybe longer depending on recovery time and referred to Neuro Physio to improve my walking.

Recognising whether you are relapsing can be really tricky when you have recently been diagnosed with MS. So what is a relapse and how do you know if you are having one? What should you do and what can help? These are just some questions you may have to find answers to. With MS they say that no two people are the same. Basically that everyone is affected in different ways and not everyone experiences the same symptoms when relapsing or having a flare up in symptoms.

What is a relapse?

This link from The MS Society website gives a pretty clear definition on what a relapse is and how you can determine whether you are having one. As the time frame where symptoms are experienced is so important, this is why documenting the onset of symptoms is really key to help your healthcare professionals assist with treating your relapse in the best way.

Should I treat it?

Now this decision is something that you need to discuss with your MS nurse or GP to decide whether treatment is going to be the best course of action. For me with this relapse, where my Beyonce style limp was causing me difficulty; it was decided that steroids would be best to nip the symptoms in the bud and to stop any residual symptoms. The idea of steroids, is that they reduce the time that your relapse lingers for, as well as speeding up your recovery time and reducing inflammation caused.

Steroids are not very nice medication to take, which is why discussion with health professionals is very important. They can give you horrible mood swings, acne, weight gain, insomnia, heart palpitations and many more nasty side affects. Although the symptoms experienced are usually short term, they can make you feel awful and you need to be aware of this before starting treatment. I am not over exaggerating when I say that all of the possible side affects mentioned in the leaflet with the steroids, I experienced. Weigh up the pros and cons, discuss it with your health professionals and be clued up on what you may encounter.

Tips and Tricks to deal with Relapse

This is the 3rd relapse I have experienced and the 2nd that has been treated with steroids. I think it’s safe to say it can take a few relapses to be fully prepared for what you will have to deal with both physically and emotionally. In Shana’s recent blog on The MS Society website, she talks about making a relapse nest with essential bits to help your recovery.

Taking steroids with jam, can be really helpful to kick the metallic taste you get with the tablets or IV line. This was something my Mum suggested to me on 1st experience with steroids, as I wasn’t able to keep the steroids down without vomitting. Trust me, I will never be on steroids without jam now! Some people find mints/gum or sweets can be helpful too! Make sure you are stocked up on food and essential bits and pieces. Organise an online grocery shop or get a friend or relative to help you.

You should focus on what you can do, rather than what you can’t with any relapse to help your recovery. My concentration and vision was so bad with this relapse, that having audio books and Disney films; was my saviour to stop me from being bored and going insane! I couldn’t focus on anything too complicated or read properly but my hearing was fine. My walking may not have been on point, but my hands and dexterity were playing ball! I may not be a Picasso, but my lovely colouring in book certainly kept me entertained!

Setting goals and targets I found to also be really helpful. It showed me how far my recovery had come. I documented this with photographs and a tick list. When I initially made a to do list, I found every task completely unachievable as I felt drained and fatigued. Day by day, different tasks are getting ticked, no matter how big or small.

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At the start of the relapse, I went to the top of the road to collect my medication from the pharmacy (a trip that would normally take me 5 minutes). It took me a lot longer as my mobility was poor and my balance was very shaky. I wanted to curl up into a ball on the pavement and cry out of hopelessness. In comparison, once the medication had started to do it’s job, I managed to get out of the house to listen to some live music near by. Granted, I had a day ticket to this festival and I barely lasted a few hours. All of my friends were out getting battered and I spent my time sat down not being able to keep up with conversation. Despite this, getting out of the house was a massive achievement in comparison to not being able to make it up the road.

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Relapses can take a while to get over completely and although I have a long way to go until I feel back to my normal self; I have made huge progress and I just hope that this continues!

What tips and tricks do you use to help with your relapses? What would be in your relapse nest? Let me know in the comments 🙂

PS: It is World MS Day today. Have you noticed MS being noticed in the paper, on TV or in social media? The MS Society are campaigning about slow diagnosis and the feeling of being left #InTheDark

Let’s raise awareness with the hashtag and carry on donating!

Have a happy holiday

MS heat

Destination has been agreed, flights have been booked and you are starting to cross off the dates on your calendar. That summer holiday you have been longing for, is only round the corner and you can finally relax.

For any trip away, preparation is key to make sure that you have a stress free time. However, living with a chronic health condition requires much more planning than how much money to get exchanged or how many bikinis to pack – although also very important! 🙂

Climate

Severe increase or decrease in temperatures can be bad news for MS sufferers. This fact sheet from the MS society gives a more in-depth view into the science behind why this happens.

If you are a sun seeker, there are a few simple ways to prevent any negative side effects the heat can have on you. From keeping hydrated by drinking plenty of water, to requesting a fan for your bedroom at night. Have shade breaks in extreme heat or even just a dip in the pool to keep your body temperature down. I personally always find that an afternoon nap can help me recuperate in time for an evening meal or a night on the town! This may seem like basic common sense, but when you are letting go and relaxing; it’s easy to forget the basics. The last thing you want on your break away, is to become fatigued to the point where you can’t even enjoy your holiday!

Medication

Most medication has specific storage instructions and this can be difficult to accommodate in certain situations. For instance, Copaxone (my disease modifying drug) must be stored in the fridge until such time as when you need to administer the medication. Due to the temperature and altitude in the hold on an aircraft, my meds have to be carried in hand luggage and taken through security.

With the new limits and regulations about carrying liquids on flight as hand luggage, a medical letter is required from a health professional. These can be requested from your medication supplier and I make sure I carry this with my passport and boarding pass when going through security. It can be daunting travelling with injections; the first time that I did made me feel like a criminal mastermind and I was convinced security were going to put me in an interrogation room and be difficult on letting me board with my meds. This of course, is nonsense and it is something that airport staff see on a daily basis.

Also don’t forget your travel sharps bin, as taking a one litre bucket for your used medication isn’t very practical! Again, this should be taken on as hand luggage.
When booking accommodation, remember to check out the fridge facilities. Most hotels and hostels will have mini bars in rooms or will be more than happy to keep your medication cool for you.

Help and Support

Keep safe the telephone numbers of your medical support network. MS nurses, GP’s and next of kins can be useful in case of emergency. I store these on my medical ID application on my iPhone, so that these can be accessed by anybody at any time.

Make sure your travel companions are aware of your health condition and how best to assist you if you are having a bad day and need help. My friends are good at telling me to slow down if I am trying to keep up with them and giving me the good advice of taking a break. Aside from this, I struggle to administer my injections in my arms, so having a friend who is happy to help is always useful.

Another must have, is to look into medical insurance for your trip. Paying a small price back home, could save you a small fortune abroad if you have a flare up and need medical assistance. Some pre-existing and chronic health conditions may not be covered under certain insurance policies, so always check before you travel. Get price comparison quotes and find the best cover you can.

What trips have you been on recently? Have you experienced difficulty with travelling with a long-term health condition? Got any tips that have made your travel easier? Let me know in the comments 🙂

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Fundraising Handover

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Ever since my diagnosis of MS in 2013, I had always wanted to give back to the charities that gave me support when I needed it most. After I had got my head around the fact that I had this long term health condition, I wanted to arm myself with as much information as I could.

The MS Society was the first website I came across and it provided me with stacks of knowledge and advice on how to come to terms with everything. The first thing I did, was to order (what felt like a million and one!) information booklets covering everything I needed to know about my diagnosis. Symptoms, treatments, how to recover from relapses; basically anything and everything relating to MS, I ordered copies of. There was so much to find out and although some of the information didn’t relate to me at that present time, I knew that it could one day.

When things got really tough and I needed to talk to someone, I called up their helpline to ramble to a friendly voice. I asked about various treatments, what sort of future I could expect and many other random questions. The lady I spoke to was very friendly and understanding of my fears and put my mind at ease.

Their social forum was and still is, one of the most valuable tools I have found to cope with everday hiccups of living with a chronic condition. When I am unsure about a strange symptom, want some advice on what medication to consider taking or just generally connecting with others in the same position as myself; this is where I always head to.

So when work mentioned in their weekly bulletin, that they were looking for their next charity to support; I knew I had to get involved.

Over the course of 6 months, myself and my team organised various events across our office in order to raise any funds for the charity. I would like to mention that ‘come to work in your onesie day’ should be an every day event! This was just one of the charity days held; along with cake sales, dressing up as ghoulish characters on Halloween and dress down days. In total we managed to raise ÂŁ550.11 which I was chuffed to pieces with. A special shout out to Barbara and Chris (my Mum’s friends), who also donated money after reading this blog – thank you so much!

I instantly got in touch with the Southampton and District Branch of The MS Society to let them know of our efforts. I organised for Donna and Debbie from the branch, to come to the office so that I could find out more about what they do.

The local branches organise various events and support groups for MS sufferers, as well as friends and families to get involved in. Meet ups, information talks and excersise classes; the branch covers it all. They work hard to fundraise the much needed money in order to run these events, as well as raising awareness for such an important cause. I hope to carry on raising as much money as I can for them in any way possible.

MS in the press

Something that must be said before I ramble on, is that Bella is not being kind to me as of recent (what a bitch!). I have had a few busy weekends in a row which has led to my fatigue being pretty unbearable, along with some random body spasms, rubbish vision and generally feeling off balance and spaced out.
My work colleagues have noticed that I am visibly more wobbly around the office as well, with them joking that they are going to carry me back to my desk after walking to the printer (cheeky buggers!). No point in being a worrier though, I know I just need to relax this weekend which is exactly what I intend on doing! 
With this in mind, please be kind if this post makes no sense whatsoever 🙂 

I thought I would do this post as I have seen Multiple Scleoris mentioned in various forms throughout the last week. I will always remember seeing Multiple Sclerosis mentioned for the first time on TV, when Jack Osbourne appeared in the MS Society Lifeline appeal video on BBC1. It was inspiring to see someone raise awareness for a cause that I could 100 percent relate to in so many ways (he also injects Copaxone as his disease modifying drug daily, just like me!).

I am an avid follower of all MS related press articles, which in turn is helping me learn new information about this disease daily. I also get some strange sense of pride when I have people say things like ‘I saw this programme the other day and the person featured had MS just like you!’. If it is bringing awareness and understanding to others, then to me; this is a step in the right direction on a much larger scale.

With this in mind, here are my top 3 finds this week of media which has kept me feeling positive and feeling like a warrior:

The People’s Strictly for Comic Relief

Episode 1 out of 4 is on tonight at 9pm on BBC1 (I’m sure this will be featured on iPlayer as well if you miss it!) and features Trishna (volunteer from the MS society and MS warrior). Dancing, raising awareness and hopefully bringing in more donations for the MS society from this being broadcast can only be a good thing in my opinion!  

In Pictures: What multiple sclerosis means to me

I saw the link to this article on the Shift.ms twitter page (another great social network for MSers!) and it really caught my attention. Photography was my BA hons degree choice and it has been a long time since graduating in 2011, where I have seen a series of photographs that instantly struck a chord with me. All the photographs were taken by MS sufferers and it is putting a positive twist on a nasty disease. Can’t get more warrior, than that!

Awkward Bitch – My Life with MS

This was the first book I ever read about MS. I remember being in waterstones and browsing the various selection of books surrounding MS and neurological conditions. All I saw was factual and quite frankly boring looking textbooks on the shelves. Then I came across this and I knew this would be completely up my street.
Marlo Donato Parmelee writes honestly about her diagnosis of MS and how it affected her life. Although in parts this book can be quite hard hitting, it is bound to make you laugh and smile as well. I would definitely recommend this is a must have, for MS warriors and their army of friends and family members. When my vision and concentration starts to behave itself again, I’ll be re reading this.

Have you seen your invisible illness mentioned anywhere recently? Have you got any recommendations on similar articles? Maybe we aren’t so invisible anymore..