Just One Breath

An American girl in Scotland, figuring things out one step at a time

Losing the lie


Last April when I was diagnosed with MS I thought to myself “I can handle this. It could be worse. I am lucky this is as bad as it is.” I didn’t feel that I was lying or holding anything back. I genuinely was trying to be honest with myself and everyone around me. I was trying to keep positive because I knew negativity and stress would only make me worse.

The healing was a long and sometimes painful process. It was strange to me that when I had my episode I wasn’t in pain just a great amount of discomfort and confusion. As I began to heal and my body was making connections with the 98% of it that had been lost for months, the pain came. Things were so bad that the Dr’s didn’t want to take the time to figure out the exact cause so they treated the 2 things it could be. Shingles or a relapse, and this was June. I couldn’t believe it 2 months. This was supposed to be Relapsing Remitting MS not Relapsing Relapsing MS.

I was on 2 types of pain medication and antibiotics for a few months several times a day.  My hair was falling out, my gums were bleeding and I was exhausted. This was not what I had expected my life to be. I began to lose my positivity and trying to believe what I had been saying to myself and everyone else was getting harder.

The Glimmer of Hope and the Fall
During this, there came a glimmer of something better and I grabbed onto that. A new job doing something creative, writing and project managing web development projects. I felt productive again, I began to feel hope starting to come back. I took on a full-time freelance position with the web company, had colleagues I loved and a boss that believed in me… things started to feel great. I had a spring in my step… then wham! Another relapse in September.

I realised I had a bad headache for several days and my neck was killing me then on day 4 of this headache I put in my contact lenses and I was looking into a dark blurred fog. I had lost most of the vision in my left eye. I was really scared and did something I swore I would never do, I went to Google and looked up MS eye symptoms.

When I was hospitalised in April they kept checking my eyes and asking about my vision, I didn’t have any symptoms so I didin’t know what to expect. Migraines run in my family and I didn’t want to over react. But… Google gave me the answer that I had feared. I had all of the symptoms for Optic Neuritis. I had to call the Dr now. No way out of it. This was a symptom I could’t ignore.

Sure enough, I had Optic Neuritis and this episode was no doubt a relapse so, back on steroids I went. I couldn’t believe it. I was heartbroken and for the first time since all of this began I felt dispair. I felt like I was relapsing relapsing relapsing my way into stage 2 MS and a life injecting myself with poison so that I would become a cripple slower, and that was it.

I went home with my new pack of drugs to make me well and I cried. I wept for hours and still had more tears. The months of only crying about the physical pain had masked the mental pain I wasn’t willing to deal with and I felt the grief I hadn’t let myself feel before now. Gone was the tough girl and all that I wanted right then was my Dad so I called him in tears. Something I hadn’t done since I got sick.

I told him what was happening, that I had relapsed and lost most of the vision in my left eye…and I cried some more. I knew it would upset him but I also knew I couldn’t ignore this pain any more. I knew I needed to let go and be vulnerable to this change that had happened in my life. No more pretending, no more lying… only tears and honesty.

Accepting My Path
By November I began to realise I was depressed and scared. I was afraid of everything walking, exercising, cleaning, anything that could cause a relapse… in my terrified mind. I tried to be positive but it was difficult. I wanted to have a child with Jamie, I wanted a real future with him and I didn’t think some of these things would be possible. I was beginning to accept that I would have to start taking shots to help reduce my risk of relapsing. I made an appointment with my MS nurse to learn about injections and to talk about what was going on in my head.

In early December Jamie and I went to meet Carly to discuss my options and every injection contraption scared me more that the last. As always, my amazing husband stepped in and said he would give me the shots if I couldn’t do it myself. He practiced with the demo shot contraption that I had tried and said he could definitely do it. Then we began to ask questions…

Would I be able to take the shots if I was pregnant?… No. I couldn’t even take the shots if I was trying to get pregnant. Yay!! We were trying. A weight lifted, I didn’t have to think about the shots for another year or 2.

What was the likely hood I was going to progress to stage 2 MS?…Unlikely. Really? Why? And the first tears of relief began to come.

She explained that if I did it wouldn’t be for probably 20 years. My body had a bad attack and my myelin was scarred. All of the little things that had been going on for months that I was afraid to tell anyone about were just my nerves “grumbling” not mini-relapses or signs of a relapse. I really had been doing everything right. Swimming, taking my vitamins, moderate exercise with weights and cardio and eating well. I didn’t need to be afraid if I felt good one day and my hands felt a little funny the next. It is typical. In that moment everything changed. I was alive again, I was me again. Hope was back and I wasn’t lying to myself or anyone else.

After that appointment with Carly supported by Jamie, I believed for the first time that I truly would be able to handle this. I wasn’t lying then and I’m not now. 4 months on I am feeling as good as ever. No MS relapses since September and not a hint of losing hope. When the day comes that I have another relapse or have to go on medication I know I will be ok. My husband, my family and my friends are there and I am actually pretty damn strong for a small girl. x heather


  1. I love you Heather 🙂

  2. Most of us have gone through similar scenarios. We rock. Fight on and remember we are all Strong.

  3. Hi Heather,

    I had my first relapse in end October and then another one in mid December. I am extremely scared at the moment and feeling quite anxious about what lies ahead. Reading your blog has been very reassuring and I thank you for sharing it. I would love to know how you’re doing, if the medication has been helpful and if you’ve had any further relapses.

    Thanks a lot.

    • Hi Saumya, Thank you for your comment. I am doing really well. I am currently not on any medication and haven’t had a relapse since April of 2014 when my first daughter was about 6 months old. I am currently set to begin taking Tec in March sometime when I am done nursing my 2nd daughter, and last baby. I held off due to wanting children and breastfeeding… and my fear of needles. I have maintained very good health with a strict exercise schedule and trying to eat well but not crazy strict. No MS diets. I am going on medication to help try to prevent any future relapses. The 2014 one was really bad and I couldn’t feel my baby for nearly 5 months with my left hand. I am afraid that another relapse will take it permanently so I am beginning meds to help prevent that. I want to be fully here for my children and husband for as long as I can.

      It is scary at first but don’t try to be brave but also don’t give up hope. You are allowed to be afraid. Talk to every health professional you can and ask the thousand questions you have. I get in touch with my nurse via email any time I have a question. Take things that you read and hear with a grain of salt and ask a Dr or Nurse if you need clarification. Please feel free to email me anytime. xx

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