Month: Nov 2018

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.