The diary of my MS

August 2007
I was diagnosed with multiple sclerosis in August 2007. Interestingly, I cannot remember the exact date, but I could tell you what I was wearing. My pink pajama top and polka dot bottoms. I could tell you how many patients were on the ward and what each of them was in for, but for love nor money I cannot remember the date. Effectively my life went on hold from that date and for six months thereafter.

September
Why doesn’t anybody understand what I am going through? Do I not look like I could do with some help around the house? Emma (my daughter) started school today. She seemed happy. I think the tensions at home are affecting her. Her dad and I just are not connecting. I feel like he cannot see me anymore. Only an illness. A shadow. I had my first outpatient appointment today. My neurologist was speaking, but I didn’t really hear what he was saying. Tony (my partner) asked some questions. It made me frustrated because I had already answered those questions. Why am I so selfish? My mother has breast cancer and I’m thinking about myself.

October
I feel like the walls are closing in on me. It is very hard to keep pretending that life is normal. I am snappy - even with Emma. I want them all to leave me alone. I told Tony when I was diagnosed that he should leave me if he felt he couldn’t handle it. The way I am acting is going to push him out the door. I don’t know how to change it. I just want him to hold me and tell me it’s going to be okay. How can he though? I am so glad he is taking such good care of Emma because I have completely checked out.

December
I am determined to make it a great Christmas for Emma. I spent way too much money. I know I am totally over compensating because I have not really been there for her. When I get frustrated and angry her Dad takes her out for a walk or takes her for a spin in the car. I feel like a total monster.

January
The weather suits my mood. Bleak and cold. Emma told me today she would give up sweets if I give up cigarettes. We pencilled in the date on the calendar. I will give them up on the 20th. I told her she doesn’t have to give up sweets. How can this child care so much about my health when I can’t even give her the attention she needs? I feel so lost and detached from everything.

February
I got really drunk today and did not come home. When I did Tony cried. He thought I was dead. I lay on the floor and all the pain I felt came pouring out. I must have cried for at least an hour. I told him how alone I felt. How I could not cope anymore. That was the turning point. A friend contacted the MS society and I got the help I needed. I went to a Newly Diagnosed Seminar with Tony and finally started to deal with my diagnosis. He told me on the way home what I didn’t understand was that he was always there for me, I just couldn’t see it. If there was any way he could take my MS from me and give it to himself he would. I need to go home and cuddle my child. I have so much making up to do.

Now
I couldn’t be more different now compared to when I was diagnosed. I have spoken at Newly Diagnosed Seminars and in schools. I have blogged about my experiences and I feel today I am in control of my life. Sure I have MS but it does not define me. Those six months were the scariest of my life but I got through it. I had a support network behind me, but I just couldn’t see it at the time. For anyone newly diagnosed the best thing you can do is talk, talk and talk but be prepared. All the different feelings you are having are completely normal and if it takes time to accept it that is okay, too. Try not to push away the people who are trying to help you. They are going through all those feelings too. Yes, there are blips along the way and some days will feel like a battle but you can do this. Take each day as it comes. You are stronger than you know. And who knows, amazing things could happen. My mother is cancer free. She was given the all clear six months later. I am off cigarettes now for seven and a half years.