‘So.. what do you think?’ Mum asked. ‘Not very comfortable and I find myself thinking about every step that I’m taking!’ I reply. Nope we weren’t discussing a new pair of beautiful high heel shoes, but the new addition to my handbag. My walking stick.
You may have read in my previous blog post, that my walking was affected as a result of my last relapse. Physio has improved my strength for the most part, but there are occasions where I feel very weak and recently I have experienced tremors in my legs. Sometimes it feels like I am walking on ice and my legs will just give way, which frightens me and causes me to have quite bad anxiety.
I was recently in the Laines with my friends in Brighton and I could feel my legs becoming weak. I found it difficult to keep up in the crowds of people doing their Sunday shopping and I had to continuously stop to steady myself or link arms with my friends for balance. By the time we had made it to our favourite breakfast stop, my fatigue was at one of the worst levels I can ever recall. It’s difficult to explain how awful it makes you feel. It was as if I had been wide awake on a flight to Australia, then taken part in a marathon through mud and to top it off having to write a dissertation. My brain fog and energy levels were very low, my legs felt like jelly. This in turn caused me to have a panic attack in an environment that I had visited previously with no issues. Needless to say, we had to pay for a taxi home and I went straight back to bed feeling awful and defeated.
Since I have moved back home, I am under a new MS nurse and we started unravelling my MS story from start to present at my recent home visit. Nadine had to cover all issues from head to toe and I brought up my concerns about my walking. She suggested that I get a walking stick. A walking stick at 25 years old?! You’ve got to be kidding me! Nadine said that just having a collapsible stick in my handbag, may improve my confidence on days where I feel like a wobbly worrier. I sometimes use a large umbrella as a leaning post. If I’m using an umbrella, no-one will judge or look at me differently for walking around with it. I was reluctant about owning a walking stick but decided that if it can help me, I was in no position to frown upon this idea.
Onto the Internet I went, to see what was available. The first links that were listed were sticks that reminded me of old age pensioners, definitely not my cup of tea! Lots of people on the MS group that I’m part of, frequently post pictures of their walking sticks. All of them colourful and decorated, so I persisted with my search. Eventually I stumbled across a funky polka dot one, collapsible and adjustable. Yep, I’m spending my hard earned cash on a walking stick – what is life!
I usually love getting post with my name on it, but this parcel was not one that I was happy to open. I got it out of it’s plastic packaging and connected all of the parts to make it into a walking stick. I stood it up next to my side and looked down at it in disgust. ‘I look like an old person and I look ridiculous’ I thought to myself. I was so angry and I felt as though Bella had taken away my youth. How will people look at me when they see me with a stick?
The stick spent a long time leant against the sofa not in use. Why would I want to use it? Why have I spent money on a stick? I don’t really need one do I? I was in a bit of a mood with it to be perfectly honest. I don’t see any of my other friends walking around with walking sticks!
My mum could sense that I wasn’t happy about the stick and she wasn’t thrilled either. In all honesty she was very upset about me having to accept the fact that I may have to use it from time to time. She suggested that a trial run in a supermarket with her may give me more confidence. I was nervous that I would look stupid and that people would judge me. As mum said, whoever decides to make uneducated opinions isn’t worth paying attention to. Much to my surprise, I got no negative comments. If anything, people didn’t bash into me when they were rushing around!
In a way, it’s good to have something visible to show that I have difficulty with my walking because from looking at me, I do look like a healthy young person. It’s not an accessory that I’m thrilled to pack in my handbag on trips out, but it’s nice to have it if I’m ever struggling. I don’t use it daily but if you see me using it, I’m probably just having a wobbly day. If you are having a giggle at my expense, I may just give you a prod with the stick – so watch out! If you give up your seat on a train or bus when I am using my stick, I am forever grateful to you. I am still not brave enough to ask to have a seat when public transport is busy, even with a walking stick and my priority seat card. To the man on the train up to London who gave up his make shift seat in the baggage area for me when no seats were free in rush hour, it meant the absolute world to me.
In contrast to this, last month I raised £377.50 for the MS Society when I took part in the Brighton 5K Colour Run. I was so nervous that Bella would give me the third degree and that I wouldn’t be able to survive it. I’m so happy to say that I completed it! I did struggle and I did have to stop on various points of the course, but I ran as best as I could and I was so happy to be doing it for such a worthwhile cause. Thank you to anyone who donated to me!
Walking sticks vs 5K runs only goes to show how each day can vary with MS. Each day is different and I never know how I will be when I wake up in the morning.
After my most recent relapse, my walking and balance was very badly affected. I had very tingly feet and as a result gained what I called a gangster limp. My left side was very weak and I had electric shock sensations going from the back of my knee to my lower back. Part of my treatment was taking oral steroids for a course of 5 days and I was also referred for Neuro Physio at the local health centre by my MS nurse.
This is the 2nd time that I’ve had physio sessions here, so I had an idea of what I could expect. However I was a lot weaker this time and I was worried that I would be stuck with the limp as long term damage as a result my relapse.
At my first appointment, I was on my last few days of steroids, so I inevitably felt rubbish anyway. Steroids can leave you feeling really weak and fatigued; although they can help in the long run. With this I found any exercises physically very challenging and I was worried that I wouldn’t be able to do much at all.
My physiotherapist Katy, was very kind and could tell that I was struggling. Our first session together was mainly spent discussing what my relapse had caused physically and what I wanted to work on in my sessions. My main focus was for my walking to improve and for my confidence to be restored. I was worried about having falls with my weakness being the way it was. I also wanted to get back to running again, as well as for my vertigo to improve.
She did a few strength tests to see where my weaknesses were and it became clear very quickly that my left side had been damaged by my relapse which is why I was experiencing the tingling and limping. She timed how quickly I could walk from one end of the room to the other. Even this made me feel nervous that I would trip and fall over. To start with, she gave me a sheet of gentle exercises to practise at home. The first thing she wanted me to tackle, was to improve my core strength to help with all aspects of my recovery. I did exercises such as bridging and pelvic tilts to start with.
I wasn’t sure that there was anything that could be done for my vertigo and balance issues. I do take tablets regularly to keep my vertigo as normal as it can be, but with this relapse it had significantly worsened. She advised that there was some exercises that could train my eyes and brain to work together as again; the signals from my brain had been getting muddled and confused because of my relapse.
Katy advised me to try something called Cawthorne-Cooksey exercises. These involve things such as looking from left to right, moving your head left to right and picking things up from the floor whilst sitting down. Sounds simple right? Not when you feel like you are already on a roundabout! At first I struggled with a lot of them and they made me feel very weird, almost to the point of feeling nauseous. After time though, this improved and I would recommend giving it a go if you are experiencing similar symptoms.
After a few sessions of gentle strengthening exercises and CC exercises, I then spent the rest of my sessions in the rehab gym. As well as Katy, I also worked with Simon a student doing work experience for physiotherapy. Just like Katy, he was encouraging and friendly and helped me so much. My first sessions at the rehab gym were mainly based on the plinth working on my core and balance exercises to make sure that I was as strong as possible. I even went back on a treadmill to see how my walking was looking. For a long time, I couldn’t go onto the treadmill without gripping onto the handrails for dear life. The treadmill wasn’t even set to a running pace, just a gentle walk but I could still feel my left side being more slanted and wonky; it was even physically visible to the physiotherapists!
Floor work I found to be really helpful, especially the happy and sad cat! Sounds completely nuts, but I found this the easiest way for me to tune into my core and be aware of how to balance myself; something that I struggled with in the beginning of my recovery. This was also an exercise that I used a lot the first time I went to the physio sessions in 2014. I also used exercise balls and ankle weights which I only had access to use at the gym, though I do intend on buying a set of these because again; I found these so beneficial.
The more I grew in confidence, the more challenging my exercises became. I was given what I felt was my ultimate challenge – the wobble board. Now these aren’t easy at the best of times, let alone when you are having to throw a ball to and from the physio. My body had to get used to coordination and balance all at the same time.For my lower limb strength, I was given Therabands which were strapped to my ankle and a support. These are designed to test resistance – they are like a big elastic bands colour coded for different levels of resistance and used by pulling your limb away from the point they are tethered and then maintaining resistance as you move it back. I started off on yellow and eventually progressed to red and green. I had my own bands that I could use to practise with at home and these are tied to the end of my bed posts. They are quite hard to ignore before I go to bed, so I tend to use these quite frequently.
At the end of each session I would use the exercise bike to spin out any tension in my legs on a low level and also got advice about stretching my tired tight muscles
As the weeks went by, I found that I was pushing myself harder to do the exercises for longer periods or doing more within my sessions in general. As I did my physio before work when I had returned to work again, both Katy and Simon were very aware that they did not want to tire me out as I was becoming a lot more fatigued. They were really good at knowing my limits and adapting my routine if I was feeling particularly worse one day. Many of my sessions were hard as I was also coping with work stress and this noticeably affected my recovery as they both said that I was visibly shaky and this definitely slowed me down.
Once things had settled down we went back to everything at full speed and I was happy that I was being pushed with things such as the mini assault course that we used to do. Jumping, hopping, skipping, walking on tiptoes, bounding, running and going up and down stairs; made me feel like I was making huge steps in my recovery. I was even able to go on my first run through the common for the first time in forever. This for me was massive and I am still so proud as to how far I’ve come. The physio’s even saw a difference when I was able to go onto the treadmill without holding on and I was so chuffed!
I would highly recommend neuro physio if you are experiencing similar problems to me. I have found it to be so beneficial and I can see such an improvement in my confidence and strength which were the main areas that I wanted to work on. Contact your GP or MS nurse to see if this is available in your area 🙂
You have been battling unknown symptoms and strange feelings for what feels like forever. You’ve seen various health professionals for their opinions and for testing. At last, you have a diagnosis and you start to feel like there is light at the end of the tunnel. We live in a world where with every problem, we want to find that one simple solution to fix it. With MS, this can be easier said than done. As of yet, there is no cure for Multiple Sclerosis; although scientific studies are being carried out to try and come closer to doing just this. However depending on the stage of your MS, there will be various treatment options available to you.I was desperate to start treatment as soon as possible after my diagnosis. Anything to try and alleviate the feelings and pain that I was experiencing. It can be a lengthy wait before being put forward for any sort of treatment, so when you are having to wait; make sure you research the different options available to you.
What is a DMD?
Disease Modifying Drugs (or DMD’s as they are more commonly known), are used to try to reduce the number of relapses experienced and can slow down the rate of disability. They can be taken in various ways from injections at home, intravenous treatment at the hospital or tablets on a regular basis. For some people they can get started on one of the DMD’s and find that their symptoms massively improve and they experience more remissions than relapses. For others it can be a teething process, to find the right treatment that suits the individual the best. Deciding on what treatment to start when you are first diagnosed with MS can be a daunting prospect, no matter on how desperate you are to start! It is so important to choose the best medication for your own personal circumstances.
How did I decide?
One of the first sites I came across was weighing it all up. This gave me a vast amount of information and advice on what to consider when deciding what medication to begin with. I would strongly recommend having a read if you are torn between which DMD to take.
In Southampton, I was referred to a DMD day session at the general hospital. This was an opportunity to meet other people with MS who were also being put forward for treatment. On the day there was industry nurses and MS specialists giving talks on each DMD to give an understanding as to what to expect with each one.
I was counting down the days until I could start on any treatment possible. In my head I convinced myself that once I started on a treatment, that would be my wobbly days over. I guess I put to the back of my mind, the fact that MS doesn’t have a cure.
I went with my mum and once we arrived at the session, I found myself becoming upset as I saw people much older than me with MS and people experiencing relapses at the time. I will admit that I definitely freaked out and became very emotional when they were asking around the room how long everyone had been diagnosed with MS for. Surely I was too young to be there? Surely I looked ‘too well’ to have MS? Now I know that these two factors do not have any bearing on who can have MS, as lots of people with MS are also young and also look ‘well’.
There was a table spread with various different treatment options; as well as sponges to act as fake skin for us to practise using without having to inject ourselves. There were many names of drugs that I recognised such as avonex, betaferon, rebif, copaxone and many more. Each one carries different side effects when taken. They also vary in terms of how frequently you need to take the medication. My mum and I, had lengthy discussions about what DMD would be the best one to start on, before we arrived at the session. For me, I felt that having a treatment with less side effects was going to be the best option. Having to administer injections didn’t faze me, as I’m not frightened of needles. For others, it may be the case of choosing an injection that you have to take less often, if they are unhappy about needles. Copaxone is an injection that you take once a day in areas such as your thighs, stomach, hips and arms. It is one of the medications for MS that doesn’t come with an array of side effects. Things such as flu like symptoms are very common on the other options available. With this in mind, we whittled it down to Copaxone as being the DMD I would opt for.
There was a young lady sat on my left with her Dad and friend who was also considering taking Copaxone. Her reason was that it would not interact with the medication she was currently taking to help other symptoms that MS was throwing at her. She also seemed just as freaked out as I was originally with being at this session, which made me feel more relaxed that I wasn’t in this alone.
After the session, I contacted the industry nurse that was at the session and asked to give the lady my contact details. Her name is Lisa and we ended up starting Copaxone on the same day. On the lead up to our first session with the injection nurses, we had various phone calls to discuss our fears and thoughts on everything. She is ambitious, courageous and lives life to the full. Just the person I needed to have around at this time! She had her appointment first and once she was finished up, I received a phone call with a full run down on what to expect when the nurses turned up to my house. To my surprise, the nurses showed up with a bunch of sunflowers that Lisa had sent to wish me luck for my first dose. She is truly remarkable and I feel so happy that I reached out to her.
The first session with the nurses was so nerve racking. The idea of injecting myself previously didn’t worry me, but when sat with two nurses and an auto inject for the medication; it dawned on me that there was no longer sponges to practise on. I was the human pin cushion and I would not have nurses with me the next day to help me. I was armed with leaflets, injection journals and equipment to carry out the rest of the injections by myself.
It’s strange now looking back on when I first started to inject. It’s become such a normality to my daily routine that I barely flinch when I do it now. Mum even laughs at me and says that I could probably do it with my eyes shut because I’m such an expert! I must admit, I’m still not brave enough to inject myself without my auto inject. I’ve only had to do it once without the auto inject when I forgot it on a night out in Brighton. Luckily, one of my best friend’s Bobby stepped up to help jab me! I guess it’s not even all that bad, I probably just need to toughen up and give it a go for myself!
The only real issue I have experienced with Copaxone is the tight chest feeling after some injections which only lasts around 20 minutes and injection site reactions which can be itchy and sometimes leave lumps. In the grand scheme of things, neither of these are too hard to deal with. However when you have been told that your medication is no longer working and you potentially have active MS, you begin to wonder why you are still giving yourself lumps and bumps daily.
After my most recent relapse my MS nurse Hazel, wrote to my consultant to update him on my most recent symptoms. She mentioned that my treatment potentially needed to be escalated to a different DMD to prevent the amount of relapses I was experiencing. I went to my consultants clinic with my best friend Mel as a support for me. I have kept a very close track of symptoms over the last 6 months and for the most part; I felt that half of the times that I was really fatigued or suffered from numbness and sickness, that it wasn’t MS related. With my consultant looking in greater detail at all the evidence I had brought to the table, he advised that it was clear that I have had more inflammatory episodes than the most recent relapse. With this, it meant another MRI to see what disease activity is affecting my brain and spinal chord. Once he has the results back, this will determine what medication I will be escalated to. The two so far we have been advised of is Tysabri and Fingolimod. Both of these come with high risk side affects in some cases and with either, I will be closely monitored by health professionals to make sure that I am still healthy.
I had my MRI a couple of days ago at the hospital on my brain and spinal chord in a very fetching outfit! I had half of the scans done with contrast dye injected by a cannula and the other half without. This was to see in clearer detail the lumps and bumps in my brain and to see exactly what was going on. This is the 3rd MRI i’ve had now and I have to say I do struggle to keep still and not fidget. I also don’t like being in tight confined spaces for too long. The whole experience was made a lot more bearable when the radiologist said that they could play Beyonce through the ear defenders for the whole scan so that I had something else to listen to besides the loud clanking and whizzing sounds of the machine. “Amazing, that will make me feel much calmer, thank you!” I said. More like ‘I will struggle to keep my feet still and I can’t promise that I won’t sing along’ I thought to myself!
Now the waiting game is back, ever so slightly in MS limbo land yet again. Back to the waiting room of the unknown. Awaiting the next step in my MaSsive Journey. Whilst awaiting the switch from my current MS DMD to a more effective treatment, I am still having to use Copaxone daily. I am finding myself getting increasingly impatient, as I know full well that Copaxone isn’t working for me. I guess I am impatient but also getting frustrated of feeling that my life is one huge relapse. To be in full remission would be a dream at the moment!
Which one will be my new treatment and what will my scans show? Now we have to watch this space..
You know that you’re going to have a great Monday when you fall over your own feet before you have even reached the office. Yes… I did just that last week! Mortified would be an understatement, but I had to laugh when I dusted myself off and carried on walking. It’s not just MSers that fall over in life. Everyone has the ability to lose balance; just us warriors more so than most!
Losing full feeling in my feet has set me back a few steps (quite literally!) and I have been feeling pretty irritated that I’m not donning my nicest heels on a night out at the moment. At least I’m not having to carry my shoes home after an evening of Beyoncé dancing!
That thought brings me nicely to a subject I’ve been contemplating writing about for a while. In the same way that everyone has the ability to fall over, we can all experience heartbreak. But does having MS or an invisible illness make this any more difficult?
Looking for Mr Right can feel like a challenge at the best of times. Awkward first dates, first impressions and spending hours rummaging through your wardrobe for the perfect outfit. Putting your trust and feelings in someone else’s hands can be really daunting and as they say; you have to kiss a lot of frogs before you find your prince.
Now imagine this anticipation knowing that you are holding something back. I have always been a firm believer that my MS does not define me as an individual, but equally I have to accept that as much as it is an inconvenience for me; the moment I share my life with another person, they may also have to bear the brunt of Bella’s outbursts. If you are new to reading my blogs, click here to read about who Bella is.
I was in a long term relationship when I was first diagnosed, so finding out that I had this long term condition meant that my boyfriend and I both started to research how this could affect our future. There were times when I found it challenging to open up about what my future would hold for me. It pushed me further away emotionally, as I felt confused and scared. As we were in a long distance relationship, not being able to discuss my emotions face to face for fear of losing him; probably caused us both to feel more distant than we actually were. I couldn’t stop thinking about everything that may or may not happen to me that could cause us to break up. I also didn’t want to be constantly whinging about it, it’s not exactly the most cheery of topics! Luckily at the time Tom and I were together, he read up on all aspects of MS and in general was so supportive to me through some of the really tough times. Although we parted ways, we still remain friends and have no hard feelings towards each other.
I think it’s safe to say that all relationships that last and that are worth the fight; are based on chemistry and true love. Of course, feelings can change over time and life may push you into different directions to what you expect. I do believe though that if your crush/love interest (or even friend) can’t see past your invisible illness, then they are not worth your time. Although I can preach about people not being worth having if they can’t see past your health, sometimes when your health is all you feel like you are contending with; it can definitely be a challenge. It still terrifies me opening up to someone new about having MS. I always find myself blurting out to anyone I meet that I have MS, as if I have to give them a heads up or a warning as to what they may expect hanging out with me.
If I meet someone and tell them it sounds like I am in an AA meeting ‘Hi my name’s Rachel and I have MS!. Equally acting oblivious to everything and not being open in discussing it, could be viewed as being deceitful; as if it’s a horrible secret I have to hide. The truth is yes, it can be a pain in the ass! You may have to adapt the way you do things, but you can still experience long and happy relationships with MS.
The real question is when do you tell someone? Should you tell them before you’ve even met them? Does it even matter? Maybe they should get to know me before they get to know Bella too? I always think that the moment someone sees me having a bad day with symptoms that they will do a runner. That if someone turns around and says that they are no longer interested; it must be because of my MS.
I have to remember that there is more to me than my health and maybe that person is not Mr Right or Mr Right now. I definitely experienced my fair share of heartbreaks before MS was in the picture! I just hope I would never even be attracted to someone that would leave me just because of having MS. I’d like to think I have better taste and go for nice genuine guys.
I honestly don’t think there’s a right or wrong answer in when you tell someone about your MS or invisible illness. You may want to make the person aware so that if you are having a funny moment and need to recuperate; you can be honest and not have to pretend that everything is ok. Some people may have pre conceived ideas on what your condition means and may have the complete wrong end of the stick. Setting them straight on how you cope, may make them understand better how to help you. On the other hand, you shouldn’t have to be judged before you’ve even had the chance to sell yourself.
Be confident, be yourself and warrior on. You never know, one day someone may put an R between the M and the S.
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.
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.
Have you achieved goals you didn’t think were possible? Who inspires you? Let me know in the comments 🙂
‘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.
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.
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!
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! 🙂
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!
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 🙂