Category Archives: Emotions

Nov 21 2013
16 Comments
Emotions

Walking That Lonely Mile…

only the lonely

A couple of months after MS first appeared, I had a conversation with my partner, telling him I knew the months/years ahead would be hard and I would understand if he wanted to leave.

He did.

Perhaps I shouldn’t have been surprised.

A study from 2009 indicated that women with cancer or MS were more than six times as likely to become separated or divorced within an average of six months of being diagnosed as were men with similar health issues.

In fairness, our relationship at that time wasn’t as strong as it once was and this could have been the proverbial straw. Following his abrupt departure, I slumped on the sofa, too stunned to cry.

My entire life was falling apart and just making an effort to get through each day was made more difficult by MS dragging me backwards, numbing my limbs, forcing me to sleep and making every step fraught with anxiety. I wasn’t walking a lonely mile (or several), I was stumbling blindly along a malignant deviation of the path I thought I had once been on.

Looking at it positively with hindsight though, by becoming suddenly single I now ‘only’ had to worry about myself and The Teenager and how we would deal with MS. In all honesty, it was perhaps easier than patching up a rocky relationship that seemed to be springing lesions as quickly as my brain scans did.

Looking at it in the depths of despair, it was truly, gobsmackingly wretched. My self-worth was rapidly plummeting, I spent night after night inwardly howling at the unfairness of it all. Who would want me now? I mean, really? Divorced single mother, wrong side of 35, oh and by the way, I have MS. Form an orderly queue and sign up here if you’re interested.

Two years down the line, thanks to a Campath-induced remission, I am slowly getting back on track. It’s been a horrendously lonely time and I probably wouldn’t have started this blog had I had a partner at my side. It would have been lovely to have someone to offload to, to share the journey (awful word) with. On a practical level, it would have been brilliant to have another adult in the house when times were bad and I battled to maintain our normal routine.

I’m learning to live alone. It’s not easy. At times it’s achingly awful. But I know that when the right person comes along, I will be in a much stronger frame of mind. Form that queue, and don’t mind me while I cross my fingers…

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Nov 05 2013
22 Comments
Emotions

Good Grief

Cardiff-20131102-00293I think I’ve finally come to terms with having MS in my life.

It’s been a long grieving process, a period of mourning what I have lost and what will never be.

But through this grief, I’m now more aware of what is good in my life, and I’ve discovered previously-untapped inner strength. So how well did I manage the classic five stages of grief?

Denial – This. Cannot. Be. Happening. I spent a long time with this thought, lying awake night after night, gripped by an unfathomable darkness, terrified of stepping into the unknown. It was an unreal situation and I blundered through it, denial far easier than facing up to very real fears.

Anger – I had this in bucketloads, plus an unhealthy dollop of self-pity. I was angry beyond belief. Just when my life was opening up again and long-awaited opportunities were within my reach, they were going to be snatched away? Seriously?

Bargaining – I didn’t really spend any time at this stage. I knew deep down that there would be no bargaining. Rather than try to exercise more or incorporate a healthier diet in an attempt to avoid the inevitable, I veered off in the opposite direction, thinking, ‘what does it matter, the damage is already done’. I self-medicated with chocolate, wine and comfort food.

Depression – This was the longest, most soul-destroying stage. I withdrew from the world, helped along by my symptoms speeding up the process. Home became my sanctuary and my prison in equal measure. Life was interminably bleak, the days long and dark, the nights longer. And darker.

Acceptance – After the awful depression, I had a choice. Either to go under or create a new way of living. I was fed up waking up every day under a cloud of misery. Rather than focus on what was lost, I looked at what I could do. What had this whole process taught me? After facing a vortex of fear and terror, the only way to look was up. The alternative was unthinkable.

Grieving allowed me to survive this change in my life and come out more positive and stronger within myself. Change comes in many guises, mine just happened to be MS. It shook my life to its foundations, but the resulting re-building is more secure and solid than before.

And the best thing? I had overwhelming support support from you, through this blog. Thank you.

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Oct 30 2013
26 Comments
Emotions

Surviving Limboland

LimbolandAccording to Dante’s Inferno, Limbo is the first circle of Hell. With good reason.

Someone emailed me last week, asking how to survive MS Limboland, that awful, terrifying period of waiting to be diagnosed.

Some of us are ‘lucky’ enough to be diagnosed relatively quickly, others wait months or years. Emailing back and forth, we came up with ways to get through MS Limboland:

  • Learn about the process of diagnosis, the McDonald criteria. This is vital to understand just why Limboland exists and how long you might spend there. Your neurologist will probably want you to meet all the criteria before giving a firm diagnosis.
  • If a suspicion of MS is raised, find out if you can have access to your local MS team, the MS nurses in particular. They are a fantastic source of support and information.
  • If you want to learn more about MS, stick to the trusted websites only, such as the MS Society, MS Trust or Shift MS. But bear in mind the forums, although monitored, are other people’s opinions and experiences.
  • Seek out support from close family and friends, but choose who you tell carefully. The last thing you want is to be more worried about how they are feeling than looking after yourself.
  • Think carefully about whether you want to disclose your possible MS diagnosis at work.
  • Be prepared for people to tell you horror stories about friends/people they know who had MS. Don’t listen! MS is unique to every single person.
  • You might have to be proactive in speeding up the diagnostic process – don’t assume you’ll sail through the system. When you have your first appointment with a neurologist, take someone with you so you don’t miss any important information.

Helping others through Limboland is important to me. I followed very few of the above points, and as a result I had a pretty miserable, lonely time.

I assumed I would be diagnosed the first time I saw my neurologist (hah!), I googled everything about MS (and frightened myself silly) and I made the mistake of confiding in (up until that point, friendly) colleagues. In reality, my diagnosis took 10 months, I since found out that no, Diet Coke did not cause my MS and my colleagues are now my ex-colleagues.

Wouldn’t it be great if there was a booklet given to everyone in Limboland outlining these points? If you think there’s anything missing from the list, please let me know.

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Oct 28 2013
6 Comments
Emotions

Every Moment Counts

blue sky thinkingCancer Research UK has launched Every Moment Counts, ‘a platform where people who have been touched by cancer can upload and share precious moments, both everyday and extraordinary’.

The idea behind it is that when you’ve experienced cancer, these moments make you suddenly hyper-aware of the here and now and of how wonderful it is to be alive. It’s sad but so often true that sometimes it takes a serious illness to remind us of this.

People like me who live with MS may not face a life-threatening diagnosis that cancer can bring, but we do have to adjust to a lifelong, degenerative and incurable illness. Life as we know it will never be the same again.

I’ve spoken to a lot of people with MS over the last two years, and we all feel that MS has made life more precious. The mundane can seem magical, we value our friends and family much more and we just seem to appreciate life in a new, more vivid way.

MS makes us stop in our tracks and take stock. What once seemed important no longer is and vice versa. The old rule book is torn up and thrown away. Although MS can appear to condemn us to a life of misery and uncertainty, it can also liberate us from old routines and destructive habits, both mentally and physically. After the obliteration of diagnosis, we can rebuild our lives in a way we choose, where we can savour precious moments so much more.

Someone told me recently that one day they just sat and watched the clouds, something she hadn’t done since she was a child. As for me, MS has made me see my life through new eyes. I’ve weathered the storm and come out the other side.

I sometimes feel like a child again, taking pleasure in the most simple things. Meeting an old friend for coffee and having enough energy to hold a conversation. A hand-written letter arriving with the post. Baking a tray of chocolate brownies with The Teenager.

Every Moment Counts is a brilliant idea, for all of us.

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Aug 30 2013
14 Comments
Emotions

At First I Was Afraid, I Was Petrified…

one tough cookieOn Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.

I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.

This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.

At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.

Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?

Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.

It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.

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