Category: ms

“But you don’t look sick.”

I read an article earlier today which raised the point of being asked to give up a priority seat on the train. It stirred something in me and I felt the need to share my take on this story. 

Not long after I was diagnosed, I was on the tram in Nottingham during rush hour. I was knackered and my balance isn’t the greatest – especially on the tram! I also struggle with sensory overload and I’ve found that crowds, like when you’re squashed in like sardines, really unsettling. I’ve come close to experiencing panic attacks in those environments. So on this day, I chose to sit down in the only available seat. A priority one, which we all know are for disabled people, pregnant women or children. If we are sat in one, we know we should move for someone that gets on that needs that seat more than us. 

I really needed that seat that day. But someone got on with crutches and a broken leg. So I immediately got up and let them sit down. But the question is, should I have? But then how do other people react to that if I don’t? People certainly look at you with a certain amount of judgement. 

Recently it was brought to my attention that someone had questioned the fact that I park on site at work but I can also drag myself to the gym. Which in fairness I haven’t done for a while as I’m struggling with fatigue. Again, it’s that same judgement as on the tram. At work, we’re only allowed to park on site permanently if we are working a late shift, or if we are a blue badge holder. The alternative is that we park a short walk away on the Bolton Wanderers stadium car park. It’s roughly a 7 – 10 minute walk. No, I’m not disabled enough for a blue badge and I wouldn’t want to be disabled enough for one. I wouldn’t wish that upon myself or anyone. But what I can say, is I wouldn’t in a month of Sunday’s park that far away from my destination anywhere else. It hurts me to walk continuously for anything more than 5 minutes. The pain varies. Some days it’s like my calves are on fire, on other days my right ankle is really tight and causing a lot of pain. If it’s not that, I’m just bloody shattered and it’s a walk that I just don’t need. My legs feel like they’re being dragged through treacle.

But back to the gym. It’s not like I’m running on the treadmill. In fact I barely go on the treadmill. If I am in the gym, I’m generally lifting weights, in an attempt to keep my strength up. As it tends to be static, it doesn’t cause the same pain as walking can. And if I’m having a bad leg day, I just work the top half of my body. If I’m tired, I just don’t go to the gym but might do some yoga at home. The bottom line is, if you don’t use your limbs, you might just lose them.

The point is, when you have an invisible illness you’re constantly being judged. Yet it feels as though no-one takes the time to understand. Choosing to remain positive about your condition can be a poisoned chalice too. Because if I’m smiling, I surely can’t be struggling, can I? Yes. Yes I can. 

Actually, “how can you go to the gym, but need to park on site?” is an absolutely fair question. Without being in my shoes, I wouldn’t expect you to understand. Same as the priority seating on public transport. The message to take from this blog, is if you have a judgement about someone, seek to understand. And that’s whether it’s about an invisible illness or otherwise. 

Finding Reiki

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The title of this blog is slightly misleading. Because I didn’t find Reiki. It found me, as is the case for most people. See, you feel called, or drawn to Reiki.

Reiki means ‘Universal Life Energy.’ It’s a gentle, non-invasive holistic therapy which can be used to heal both physically and emotionally. If you are attuned to give Reiki, much as I joke about having ‘healing hands’ that’s not strictly true. You are simply able to act as a channel for this spiritual, universal energy to reach the recipient. Reiki is an intelligent energy, so whilst intentions can be set for how it works, it will always work for the highest good. In other words, it will help you in whatever way you need. I find it really tough to explain actually, and if you feel open to it, the only way to “get it” is to experience it.

My journey with Reiki started in July last year when I saw an event on Facebook for a First Degree Reiki attunement at the MS Therapy Centre. For unknown reasons, I felt that I just had to go on this course. I’d never even had a Reiki therapy at that point.

The course was booked in for the 15th September and before then I did finally experience Reiki and I just knew I was on the right path. My first therapy was about a week before I was due to go back into work after I’d been on long term sick after Lemtrada. Anxious is not a word I would use to describe myself. I’m pretty chilled out. But I’d started to get really worked up about going back to work. I had the most horrendous knot in my stomach. Reiki definitely helped me to relieve that. I had a “healing crisis” after my first session. This is normal in lots of people as “bad energy” gets unblocked from your system and can present itself in lots of different ways. For me it was uncontrollable sobbing and a splitting headache the day after! It didn’t put me off though and I had a further treatment before attending the course.

The First Degree attunement was easily the most spiritual experiences of my life. First degree has a heavy focus on self-healing, but also enables you to heal friends and family, pets and objects. So basically anything! Even food. You’re not going to make it organic or anything, but you can dissipate any negative energy that might be in it. Following on from the day long course, I had to practice Reiki everyday for 21 days and keep a journal of my experiences. This was the point at which I became a Reiki cynic. How on earth was I able to do this undefinable, sacred, pretty much magic, healing thing? I was totally open to receiving it from Nicola (my Reiki master), but I just couldn’t get my head around the fact that I was able to do this “thing” that I was in awe of. Receiving it is the most incredible gift and I really struggled to believe that I could give it.

In spite of my doubts, I persisted because they say that the more you use Reiki, the stronger your ability to attune to the energy becomes  And your confidence grows too. The first “a-ha” moment came for me six days after my attunement when I gave Poppy her first Reiki therapy. I had read a lot about Reiki for dogs and how you can give it to them. And she was exactly as they described. She remained so calm, and occasionally moved to direct me where she wanted my hands to go. Dogs are far more intuitive than us and just “know”. When she had had enough Reiki, which was about 40 minutes worth, she got up, licked me on the nose and walked off. Just like they described in what I had read. I couldn’t believe it! Maybe, just maybe…

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By Day 16, when “switching on” Reiki, I had started to feel a shift of energy in my hands. I was starting to observe some really positive changes in my life. I was losing some obsessive habits that aren’t good for me. At the end of the 21 days, I received my certificate and continued to practice Reiki on myself whenever I felt called to do so. I purchased a massage table so that I could be comfortable whilst giving it to friends and family.

I eventually plucked up the courage to give the girls a therapy and I was met with an overwhelmingly positive response, and for the first time, I gave in to intuition whilst giving Reiki. It was a real confidence boost! After that, I continued to give the occasional therapy to people who wanted one but gave it mostly to myself and Poppy (when she let me!)

On Saturday, I had my second degree attunement. This is so exciting, because it means that I can call myself a Reiki Practitioner should I choose to. That means, I can have a business, although this isn’t something that I feel called to do right now. In addition, I can send Reiki over distance and to the past and future. In order to get my certificate, I need to do 30 of these types of therapies. At least 15 of these should be over distance. In addition I need to do four hands on therapies and receive four.

I am loving this journey so so much and I would say without a shadow of a doubt, this is the greatest thing I’ve ever discovered. Even better than sliced bread!

 

 

 

 

Going Strong

Although I go for appointments every month I only see Danny once every three, and today was my day to see him. The last couple of times I’ve been to see him I’ve been feeling pretty fed up, but today it was nice to be able to go in with a smile on my face. 

I vowed not to get too hung up on my lymphocytes (white blood cell count) because it’s normal for it to fluctuate month on month. There are also theories about the slower it building up, the more effective the treatment. I didn’t want to get obsessive about that and wanted to do my best to remain calm and to just let Danny let me know if there was anything to worry about. I did however give in today. After a bit of a cold that I recovered better from than the rest of the family over Christmas, I was a little concerned and it made me want to check in.

My white blood cell count is at 0.6. For the average person, that’s rubbish, but for me, that’s good. The idea is that they get back up to 1 (which is the low end of a normal person) in time for the second round of treatment this year. So six months on and I’m just over halfway there which is a good sign. I’m glad I gave in and asked!

I’m feeling good so far this year I don’t tend to prescribe to the whole “this is my year” vibe, but I actually feel like this year could be. Who knew?! Certain aspects of my life feel a little odd at the moment but they’re definitely not dulling my sparkle, which is all I can ask. All in all, there’s no January blues to be seen here, and I’m feeling really uplifted.

I’ve started my new shifts at work now too. Today’s my second Wednesday off since going on them but it’s way too difficult to tell if they’re working for me yet. Surprisingly though, working until 6 is not as grim as first anticipated. Last Thursday and Friday it would be fair to say that I was just as bloody knackered as usual, but after 18 days off over Christmas it’s no real surprise. So I’m not calling it a failure yet!

For anyone who isn’t a friend of mine on Facebook, you might not know that I have been studying an HR qualification – Advanced Employment Law. The assignment was due around about the time that I went blind in my left eye, so I ended up deferring it. That was 18 months ago. The CIPD (who I studied with) have been great and continued to let me defer it, but in October I decided that after roughly 15 months, I needed to just knuckle down and get it done. I found out on Friday that I’d passed it which I’m over the moon about. It’s a stress off the list and it’s another string to add to the bow. Prior to being diagnosed I was really keen to pursue a career in HR case management. It’s still not a complete write off, but I guess my desire to further and develop my career is not a priority at the moment. I’m really just happy doing a good job in my current role in Learning and Development. MS had made me realise that a career isn’t the be all and end all. And at only 32, there’s nothing stopping me picking it back up again when I feel called to do so. 

I feel as though I’ve spent my life developing myself academically, and right now I’m enjoying developing myself in terms of who I am and how I am. I’m enjoying pursuing mindfulness and meditation. Exploring my spirituality. On Saturday, I’m doing my Second Degree Reiki which will make me a Reiki Practitioner and that’s really exciting too.

When people ask me how I am, I often say plodding along. But right now, it’s fair to say I’m skipping! 

Hey there, it’s Yogi (Bear)

Happy New Year! Hope you’re feeling good. Promise me you didn’t say “new year, new me” and said “new year, same old awesome me!”

Anyway, as luck would have it, my endless weeks of fatigue which have seen me not step in the gym for roughly two months has come to an end. So obviously, just as all the usual January hordes are turning up, I get my mojo back. Bloody marvellous. It’s ok though. I have a cunning plan for the next 30 days. THEN I’ll go back to the gym!

Last January, I signed up to Adriene Mishler’s 30 day Yoga journey. Because I never see ANYTHING through, obviously I didn’t complete it. I think I did about three days, decided it hurt too much and I couldn’t make time for it, and gave up. This year however will be different. This year I want to continue to just work on my spiritual, mind and body connection and I feel like Yoga is just another step in that journey. And this year, if I miss a day, that’s ok. I’ll just pick it back up again the next day. No-one, anywhere specified that it had to be completed in 30 consecutive days so I literally have no idea why I put that level of pressure on myself!

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This years journey is called “Dedicate.” Which I fully intend to “dedicate” myself too (I’m here all week!) Today was Day 2 and just like yesterday (and last year) it was really bloody hard. When I was in my late teens and early 20’s, I loved Yoga and was also a huge fan of Les Mills’ Body Balance. I was also about five stone lighter and three dress sizes smaller. And a lot more flexible. And MS hadn’t broken half of my nerves that help with balance!

It’s really bloody hard when you know how easy you have found it historically. It’s really frustrating. Something that I have previously found peaceful and calming is (did I mention) REALLY BLOODY HARD!!!!! Trying to find peace in all that huffing, puffing and complete lack of grace feels pretty impossible.

BUT!

This is a marathon. Not a sprint. Today was easier than yesterday. And my next session will be easier again. I’m on Day 2 of 30. Day 3 of 365. So what if I’m feeling more “Yogi Bear” than Yogi. We go on.

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In other news, I mentioned a few blogs back that I was exploring options to help manage my work-life balance better. Now that it’s agreed, I can say that I’ve compressed my hours. So I will be working four long days with a Wednesday off which will give me a little relief mid week. I start on Monday, and I’m looking forward to seeing how it might help me. Some people have asked me why I haven’t just dropped a day, but that would result in losing 20% of what I earn. Which is a lot! I don’t feel as though I want to do anything quite as dramatic as that just yet. Not until I’ve tried other options. And I really feel like this one will work for me. So I’m feeling quite positive.

I’m due to see Danny (my MS Nurse) in a couple of weeks for my three monthly appointment, and I have my blood test at the same time. I’ve resisted getting obsessed over my lymphocytes up until this point, but I’m going  to ask him where I’m at when I see him. I’m also planning to get back in touch with the counsellor as I want to get started on sessions. Although I feel in such a better place and feel as though I have turned a corner, I feel like I need to tackle any demons that are lurking. I might just be suppressing them.

Finally, I’m so excited to say that I’m going on the next part of my Reiki journey on 19th January. This will enable me to call myself a “Reiki Practitioner” and send it over distance. I’m so excited about this as I’d love to be able to send it to my parents who live a good 250 miles away from me.

All in all, I’m going into 2019 feeling really positive, and I hope you are too!

5 Tips for Supporting a Friend with MS (or any invisible illness)

Monday 3rd December is “International Day of People with Disabilities”. In recognition, my employer asked for five people to share their story. One person a day will have their story featured on our local intranet in the Diversity and Inclusion pages.

Although I have previously written that I didn’t want my “This Is Me” story to be about my condition, I’m still up for raising awareness in any way that I can. So I found myself putting my name in the hat. I suggested I wrote something that would help people when it comes to supporting a friend or colleague who has an invisible condition. I know so many people have just not known what to say or do – before I had MS, I WAS that person.

Here’s what will be being shared on our company intranet at some point next week…

“Back in January of this year, I was diagnosed with relapsing-remitting MS (multiple sclerosis). It was a shock and bittersweet all at the same time. After years of having odd little bodily quirks, I could finally explain them all. Despite such a harsh diagnosis, my future prognosis isn’t bad. I have had the first of two rounds of a mild form of chemotherapy which reboots my immune system. All being well, it will stop my disability from progressing further. I’m due my second round in June next year. What this means is that whilst my condition won’t get worse, I still suffer with those quirks I mentioned. My mind goes blank mid-conversation sometimes. I get pain in my ankle, wrist and thigh when it’s cold. I have a numb tingling sensation in my legs and I’m often fatigued. Some days though, they’re non-existent. On others, it will be all I can think about.

Adjusting to being diagnosed with an invisible illness can be really tough. I certainly have bad days, but with the help of amazing family and friends it’s a whole lot easier. If you know someone with an invisible illness, you can help too. The problem is, sometimes it’s difficult to know what to say or do. So here are my top tips for supporting them!

1. Ask about it

If someone confides in you that they have a condition, they’re giving you a licence to talk about it. Thank them for being open and then ask them how it affects them. It means a lot when someone asks questions to understand the condition more, rather than just trying to avoid the subject. Find out from them what they need from you to help them day to day. Chances are they don’t want to be treated any differently, but there might be something that you can do to make their day easier.

2. Check in with them

I go totally off grid when I’m struggling to cope with my condition. I become withdrawn and you won’t hear from me for days. At some point, someone will notice that this is a bit out of character for me and check in. I’ll admit that I’ve not been ok and they’ll tell me that they are always there for me if I need to have a moan or sound off. Thing is, when you’re in that space, it doesn’t always occur to you to do that. So make sure you drop your friend a regular text to let them know you’re thinking of them.

3. Cut them some slack

It’s typical that someone with a chronic condition suffers with some degree of fatigue. That means that even the best laid plans can go wrong if they’re just too tired to function. Be forgiving if they’ve cancelled that night out for the third time in a row. In work, you might catch them yawning a lot. Go easy on them, it’s not personal.

4. Don’t make assumptions

Every day with a chronic condition is different. Some days you can take on the world and on others you can’t get out of bed. Then there are the days in between. Avoid making assumptions about what your friend, colleague or family member can do. Don’t stop letting them make their own choices and keep on inviting them to social occasions. Sometimes they will accept and other times they might politely decline. But they will always be grateful that you have continued to let them make their own choices.

5. You don’t have to find a solution

With all the best intention in the world, we want to solve people’s problems. But if the top doctors can’t find a cure for the condition, it’s unlikely that you’ll be able to provide a solution yourself. If they want you to give a solution, they’ll ask for your opinion.

Ultimately, the best think you can do is make sure that person feels loved and cared for. They need to still feel like a person, and sometimes the best way of doing that is doing absolutely nothing differently. Find out what you can do to support them but the key is to take their lead. Nobody with a chronic condition will manage day to day in the same way. The only way to find out, is to ask.”

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My insane sanity!

MS and Depression.

A few weeks ago, it came to my attention that I’m not as ok as I thought I was.

Dave came upstairs to find me curled up in bed crying my eyes out. I always say that he’s the kind of guy that you want around in a crisis, and he was true to form this time. He climbed into bed with me and gave me a big hug, letting me cry it out.

The conversation when I finally calmed down went a little like this:

Dave: “So, what’s up?”

Me: “This. Everything. Why me. It’s not fair. Life sucks. All I do is work and sleep. I don’t want to live like this. And I’ve not actually had a relapse since I found out I was diagnosed. I wish I was still going on, blissfully unaware, because I wouldn’t be feeling like this.”

Dave: “Your body has been through loads this year Joey. We knew it would be tough but it will be worth it in the long run. It’ll be ok.”

Me: “It doesn’t change the fact that life is so boring. I’ve lost my zest for life and I don’t know who I am anymore.”

Dave: “It’s ok. I don’t mind. We’ll be ok.”

Honestly. Always the voice of reason and I don’t know where I would be without him. He’s absolutely right. What’s really getting me down is that I’ve been using lots of annual leave to just sleep. And my weekends are just spent sleeping, apart from running a couple of errands. I sleep, and I work. Not the life I signed up for, and I imagine it’s certainly not the relationship that Dave signed up for. There’s a lot of guilt around the impact on him.

After spending some time reflecting, I’ve come up with some options for how I can make this work as we go into the New Year, but right now, I don’t know the feasibility of them, so watch this space for an update on that.

Other indications that I’m not as alright as I could be is that I have neglected my blog. I just haven’t felt up to writing. A lack of creativity is definitely apparent. I’ve been spending a lot of time on my own. I’m the kind of person that as soon as you text me, I’ll respond within minutes, but I’ve just not been up for getting into conversation. Generally a supportive friend, and happy to coach people close to me through difficult times and give advice, I just don’t feel up for taking on other people’s problems. I can’t be bothered to engage in trivial conversation. I prefer silence. If I’m honest, I’ve just not been feeling like me. I’m spaced out and so tired all the time. Dave’s working away a lot which is making me feel sad because I miss him, but it’s also giving me much needed space on my own which is good for my soul. Apart from the people closest to me, I’m just not feeling very “people-y” right now. It’s nothing personal. It’s just what I’m going through.

On paper, I’ve got all the symptoms of depression.

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Depression is common in people with MS. The first (and perhaps obvious) reason is that dealing with symptoms can really get you down. When people ask how you are you have options. Just gloss over how you’re feeling, in spite of feeling physically awful. Or you can be honest. Either option messes with your head. However you approach it you end up feeling rubbish. If I choose to hide it, nobody actually knows that I’m struggling. But then I’m mad that they’re not being mindful of how things are for me that day (yes, yes I know. Not their fault. I should have been honest.) But if I tell the truth, I risk sounding like a broken record. Because I’m always dealing with something in varying degrees of severity. Even on the good days. I honestly feel like I can’t win!

The second reason that people with MS suffer with depression is because the nerves relating to mood are damaged and sending the wrong signals to your brain. This ends up making you feel depressed for no apparent reason. It can do with this all sorts of moods, not just depression and people with MS are prone to dramatic and unexplained mood swings.

When I last saw Danny (my MS nurse), he gave me the details for an MS Counsellor. Through talking, he suggested that perhaps I’d not gone through a grieving process yet. I need to grieve the health that I’ve lost. Maybe future possibilities too. At the time, I didn’t really agree, but just a few weeks later and I’ve done a complete U-Turn on that. I definitely need to do some work on coming to terms with the past year. Whilst I regularly think of so many positives that MS has given me, I can’t help but think that they’re distraction techniques. So much of my positive approach to what I have been through has been about how I’ve distracted myself from tackling this head on. And maybe a little bit of denial. For a long time, it felt surreal. It didn’t really hit me. I’m thinking about it less now, but when I do think about it, I’m a cross between disbelief and distraught.

So what’s next for me? The medication I’m on for neuropathic pain, is also an anti-depressant. I’ve been in touch with the MS Counsellor and will also explore options through the employee assistance programme at work. I’m finally ready to work through accepting my condition.