This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
In her latest guest blog Chloe gives us an insight into her first year of Tysabri treatment…
I can’t believe it’s been a year since I embarked on my new multiple sclerosis (MS) treatment, Tysabri.
What I started in trepidation has now become my lifeline. It has really transformed my life…but let’s start from the beginning.
As treatments go, it’s pretty non-invasive. I remember the first time well…I was nervous. I used to have a fear of having cannulas put in (after an unpleasant experience when I was younger) so to have one every month was nerve-racking. I sat down in the high backed treatment room chair, my heart fluttering. Heather, my MS nurse, had just started at the MS unit herself, so we were embarking on this journey together.
So after basic observations (temperature, blood pressure) were taken it was time for the cannula. And what a fuss I had made! I had built it up into something awful in my head, but it was absolutely fine. It was no more painful than having a blood test, and I’ve had plenty of those in the past! What a relief it was though.
Once the cannula was in, I was rigged up to my first infusion and we were away. I couldn’t feel anything going in, there was certainly no stinging or irritation, so all I had to do was sit back and relax. Heather joked that it was ‘enforced rest’ for me because, what with the children, it’s very rare that I get an hour in the day to just sit back and read a book.
The infusion took roughly an hour, and then I had to sit and wait for another hour to make sure I didn’t have any ill effects. There were no side-effects for me at all. If anything I felt quite buzzed up! It was probably from the relief!
The whole appointment took 2 hours, and then I was sent on my merry way.
The ‘buzzed up’ feeling lasted a day or two afterwards. I felt stronger and more energetic.
13 infusions down, and a whole year later and I feel like I can reflect now on any positive effect Tysabri has had.
Firstly, I haven’t had a relapse since I have started. I normally have at least one relapse a year, so already that is a very good sign and shows that something positive is going on. I don’t get the ‘buzzed up’ feeling after treatment any more (if anything I come out feeling tired), but every month is the same non-painful and simple procedure.
I can honestly say that I can do more now than before. Tysabri isn’t meant to get rid of day-to-day symptoms such as fatigue, but what it has done has pushed me into a good state of remission. My symptoms are manageable, and being able to do more exercise, I feel healthier. At the end of each month I do find myself flagging a bit, so I look forward to my appointments so I can get ‘topped up’ again.
I am so happy to have found a treatment that finally works for me. I had previously tried Rebif, Copaxone, Avonex, and Tecfidera, but none had helped reduce down my rate of relapses. I was in a bad place with my depression also at a peak, so Tysabri really felt like a light at the end of a tunnel.
But of course, there have to be down sides.
Firstly, Tysabri is only eligible for those who have two or more severe relapses in a year. I was ‘lucky’ in that after two relapses close together I was now eligible to try it, but for years I had just missed out.
Secondly, there’s a risk of developing Progressive multifocal leukoencephalopathy (PML).
Tysabri has its fair share of common side effects (tiredness, headache, muscle pain, to name a few) but a less common and extremely serious side effect can be contracting a brain infection called PML (Progressive multifocal leukoencephalopathy). This can lead to severe disability or even death. A test is done before treatment to see whether you have something called the JC virus. If you are positive, then it increases your chances of contracting PML from 1 in 10,000 to 1 in 1,000.
For the past year, I have been JC negative, so for me the positives outweigh the negative risks. However, would I continue on treatment if I turn out to be JC positive? That’s a really tricky question and one I will have to dwell on if the situation arises. I have met other people on Tysabri who are JC positive, but carry on with treatment anyway, but I’m not sure whether I would feel comfortable taking the extra risk.
That’s a topic for another day though. So far Tysabri has turned out to be a positive experience, and it’s allowed me to take on a new lease of life. I can make plans again without having to worry about cancelling them, I can take the dog for a walk independently and confidently and can play with my children without getting too tired. Long may it continue!
You can follow Chloe’s story at tantrumsandtingles.blogspot.co.uk.
In October last year, we launched MS-UK Counselling, a brand new service for people living with multiple sclerosis (MS). We were delighted to welcome Nileema to the team as our Counselling Coordinator, and in December Jonathan and Wendy joined the team. We are all BACP registered or accredited, have many years of counselling experience and are trained in working with people with MS. So we think it’s time you get to know the latest additions to our team!
Hi, I’m Nileema. My interest in counselling started when I first had counselling myself over twenty years ago. I saw the massive difference that counselling made to my life and felt inspired to train as a counsellor many years later. I have found that no matter what the problem, there is a space for it in counselling. I have worked with individual and couple clients. I also provide training and clinical supervision to counsellors. I was really excited to join MS-UK in September 2017 to lead this exciting new service. My role is to run the service, carry out assessments with clients, ensure that we are legally compliant and work to high ethical standards, as well as provide counselling.
Hi, my name is Jonathan. I decided to train as a counsellor after appreciating the importance subjectivity plays in our lives, and the uniqueness this holds when attempting to understand our circumstances. I am an integrative counsellor and have particular interest in the role that attachments play in our lives. One of the principles I strive to offer is autonomy, which is the respect for the client’s right to be self-governing. My intention is to offer choice to the best of my abilities, and aim to reflect this through a discussion of your expectations during our work together.
Hi, my name is Wendy. I used to work as a learning support teacher and I became aware at the time of how children and their families needed additional support through counselling. I am a qualified person-centred counsellor here at MS-UK. I am really keen to support clients by helping them understand themselves in light of their MS. I have experienced the value that counselling can offer each individual through my own personal circumstances. As a team, we are proud to be offering the only counselling service of its kind across the UK. We believe that by listening to people affected by MS, we can shape a great service and offer something that people need and want.
In her latest guest blog Joanne ponders on Christmas, multiple sclerosis (MS) and ‘me time’...
Like many of us, a #christmas #break was on my list but didn’t happen.
For the simple reason, there has been too much going on. The family has been battling bugs (which has made my #MS rubbish), many festivities with late nights, #travelling, #family politics and eating indulgent food. It has all had a toll. All adding up to putting my #writing on the back burner.
Many recent events can be put down to MS. My rubbish #walking (I’ve realised Prosecco doesn’t help, despite it tasting nice), #speech sounds like I’m drunk (I’m not but everyone assumes I’ve had a few!) #spilling drinks (more noticeable at this time of year when transporting from the kitchen to guests) breaking wine glasses which need clearing up (another sign that things aren’t right) and #forgetting important things like turning my Dad’s home upside down as I convinced myself that I’d lost my wedding rings (they were back at home). I’m also contending with lots of pain.
You can say I’m just a clumsy, forgetful cow and despite resting, I’ve probably pushed myself too much, resulting in the MonSter coming out.
Christmas has made me realise how real MS is. OK, so I knew MS was real. There has been lots of tears. Tears because I know this is my reality as I’m so frustrated. Like a well known sports brand “just do it” is what I want to be like, what I was previously to #multiplesclerosis but I can’t “just do it” because of this stupid disease. My body has given up. As that advert says, we are in that Christmas limbo period, when we’re probably having a break before new year. I’m sat in my pjs (it’s 4pm, hopefully no one is coming around), watching Christmas television on catch up and doing very little because I’m exhausted. I’m getting my break now.
So with a #newyear on the horizon, reflection in the air, what do I want differently for #2018:
MS is a daily battle but remember you only have one shot at being you. Tears have come and gone. I will have good and bad days but doing the best I can is the only option.
There’s no magic pill to pop for MS (I’ve been told take this or eat that). Nothing cures, it may help, who knows. Fatigue for me, feels like I’m swimming in thick chocolate (there is probably too much of it at this time of year!) Recharging doesn’t cure MS fatigue but helps. I wrote my tips for managing #fatigue as a mummy with MS for the #MSSociety. I said “MS is like having a battery that can’t be fully charged, so know your energy drainers, those things that just zap the life from you”. Christmas is an energy drainer. But I know next Christmas (or any big event) has to be different.
In my past #writing, I’ve talked about this. I feel guilty for having no energy. I will continue to remind myself to cut some slack, especially as next year comes with more of little man’s milestones. I live with MS, that’s pressure enough.
This links with the previous point. This year has been full of acceptance. I’ve had grab rails, a walking stick, Blue Badge and a EDSS scale of 6 ( I had to google too!) All physical reminders that I’m no superwoman (I probably wasn’t before MS although I thought I was!) Life might be tough but accept all help and adjustment. Anything for a better life.
This year, #stleonardsyork have been great giving me more “me time”. I’ve tried #arttherapy, #laughteryoga and various treatments like #reflexogy. With my weekly stint of #pilates, I will plan in more “me time” for next year. Everyone deserves it. This year, I’ve used writing as my therapy. I will continue to. Thank you to everyone who believes in me. All there is to say, is have a fab 2018. Let’s hope it’s full of love, health and happiness. And sod resolutions!
We are delighted to announce that our new service, MS-UK Counselling, has now launched, and we wanted to share our short video with you…
Our telephone counselling service is focussed on helping you understand yourself in light of your MS and exploring its emotional impact on your life. It is available to anyone living with multiple sclerosis aged 18 and over, and is completely confidential.
In her latest guest blog Chloe deliberates over 'over-doing it' with multiple sclerosis (MS) and how she has learned she has to ask for help...
Ah, the havoc kid’s parties can create. Not only is the house a tip afterwards, but they shake me right to the core. Lib was 6 the other day, and we had not one, but two parties for her – a family one, and a friend’s one. I remember last year saying I would never do two again, but low and behold I did not heed my own words this year.
I love them, I really do, but the planning, executing and aftermath takes it toll. I did a hell of a lot of baking (which again, I love) but that ultimately means a lot of standing in one place. Not good for the MS! Or in other words – strike 1. Then there’s the running around at the actual parties – strike 2 for the MS.
Strike 3 comes from the bipolar. Running on adrenaline and manically planning things means I tend to become too high because my body can’t regulate things properly. And what comes up, must come down, so after everything was done, I crashed on an epic scale and ended up in bed for nearly 3 days. I became tingly and fatigued, and was suffering from exhaustion and depression. So yeah, another example of how everything takes it’s toll.
It wasn’t a serious relapse, so I didn’t get in touch with the MS team and I knew what it all stemmed from, but in my mind it was what I like to think of as a minor-relapse. One that will ultimately get better after a few days of rest. And it did, so everything is fine. But it did get me thinking about how fragile life with MS can be. Just a simple thing like organising a birthday can derail things on an epic scale.
But how am I meant to cope with life as a Mum of two kids and still maintain an even keel on my MS?
Life with kids is hectic, and not exactly predictable. I guess the answer is help. Asking for it, which I confess I’m really bad at doing, and accepting it when it’s offered. Plus, and perhaps more importantly, I need to accept that perhaps I can’t do what ‘normal’ Mums can do.
Working around this is going to be tricky for me, mainly because it means that at 6, Lib is now old enough to take on board things that are explained to her. So is it finally time to have a ‘conversation’ with her, or do I just carry on casually mentioning my MS in passing in the hope that it sinks in? It’s a tricky one for sure.
You can follow Chloe’s blog at https://tantrumsandtingles.blogspot.com/
Download our ‘Am I having a relapse?’ form from our MS symptoms page.
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.