Keeping calm, carrying on

Since Daniel's diagnosis, I have been diagnosed with depression. I have been told that I'll cope better when I am able to accept his MS. That makes me angry. How could I accept this? Why should I accept this? Accepting it feels like giving up the man I know and love. I will never do that. I have been told that I need to grieve for the man I have lost. I have not lost him. I will not grieve. I have been told I should grieve for the life we have lost. We still have it. I will not grieve.

Instead, I'll take my medication, keep calm and carry on. We are a happy family. We have a lot to look forward to. I need to be strong for my family. Help them to enjoy what's good in life. What place does grieving have there?

The future will be different from what we had planned. We were trying for another baby. We have stopped. I grieve for that. MS doesn't take over our lives now, I know that in the future it could. Will I grieve then? I don't know. I'm not planning on letting that happen. I know my husband isn't either.

The day that changed our lives

What does it take to get a man to visit the doctor?

January 2009

Him: I think I have sciatica.
Me: Nurofen will help, it shouldn't last longer than two weeks.

Two weeks later

Him: I still have it, the nurofen doesn't work.
Me: I think you should visit the doctor.
Him: Hmmm

I worry that it could be MS, but I don't tell him.

June 2009

We are on holiday. We have an argument. Finally Dan tells me what is bothering him.

Him: I am so scared. My arm is numb and I don't know why. It's been going on for months. My other arm was numb last week.
Me: It'll be alright. You have been very stressed. It could be that. Perhaps you should go to the doctor.
Him: Hmmmm.

I worry even more. I notice that he sometimes stumbles.

July 2009

Him: My legs are numb.
Me: You really should go to see a doctor.
Him: Hmmmm

August 2009

Him: My legs are numb

I cannot repeat the rest of what he said, but the jist was that his private areas were numb.

Me: You need to go to the doctor.
Him: OK, I think I will.

So that's what it takes.

He finally goes to the doctor.

I wait for him to come home, distracting myself with housework. He walks in and announces, "My doctor put her finger up my butt, and now I need to go to A&E."

I couldn't help but giggle.

At A&E

They think the problem is in his spine. The orthopedic doctor looks worried. She sends him for an MRI.

After a few tense hours, we hear that the scan is clear. "We are sending for the neurologist," they say.

The neurologist arrives. After a lengthy exam, he says, "We need to find out what's causing the inflammation in your central nervous system. " He arranges another MRI.

The day that changed our lives

We arrive at the hospital to get the results of the scan. Almost as soon as we arrive, we are taken away to a quiet room. The neurologist is there. He shows us the scan. "I'll be straight with you, Daniel," he says. "Your symptoms are being caused by inflammation, like we thought. I need to be straight with you, you have Multiple Sclerosis."

Bang, the bomb drops.

I know we are lucky

Some people go for years with unexplained symptoms before they find out they have MS. It's called limboland. There is a lot of help out there for people with MS and their families. If you are in limboland, what do you do? If that is you, the MS society will help you.

We were lucky to find out so quickly, I know that. It doesn't seem to make it any easier though. From when Daniel was first telling me about his symptoms, I found it hard to cope. The three weeks we went through of waiting for the results for the MRI were living hell. The news that it is MS was devastating.

I have a difficult relationship with MS

When I was 12, I found out that my Mother has MS. No one had told me or explained it to me. Just as the school Christmas holiday started, my Mother had a relapse. I knew something was wrong, as she'd always come into my bedroom and fling open the curtains, insisting that I don't waste the day. That day, it didn't happen. I crept downstairs, I could hear my Father on the phone. He was telling someone that she had Multiple Sclerosis, and that she couldn't see. I was so scared. I had no idea what MS was, but it didn't sound good.

A couple of days later, I asked my Mother what was wrong. Despite her insistance, I couldn't shake the idea that it was terminal. Of course, MS is not terminal.

My Mother didn't seem comfortable talking about her MS. I didn't talk to anyone about it. There were problems in my family already. My Father caught me crying once, and told me that I was being selfish. At 12, I was left to do all the domestic chores for the family, under the threat that it was my naughty behaviour that was making my Mother ill. I desperately wanted to leave home.

I stayed at home until I was 18. Once I left, I never wanted to return. My relationship with my parents improved. When I was 21 my parents divorced. In the same year, I met my husband. He was unlike any man I had ever met, and I fell for him instantly.

Blissfully happy and deeply in love with this caring and sensitive man, I married him in 2006. We have been together for nearly nine years now, and I still feel as much in love with him as when we first met, but our love has become deeper. We had our first daughter in 2008. At the start of 2009, Daniel started to loose sensation in different areas of his body. I panicked.

The rest you know.

Going away shouldn't be so difficult

Before Daniel's illness appeared, we booked an action-packed month. The first week in November, we are going to Centre Parcs. Towards the end of November, we were going to go to York.

Centre Parcs have been brilliant - I called them to explain Daniel's condition, and they told me no problems, they can arrange shuttle transport for him so he is not sitting on his tod in the cabin. York - not so great. The only provision for disabled access is Shopmobility, who are closed on Sundays and Mondays (two of the three days we are there).

The problem is not so much that York's Shopmobility is closed on those days, it's more the way the guy dealt with me on the phone. "We can't help you," said in an abrupt manner is not easy to hear when you are struggling to come to terms with your husband having MS. I had to end the conversation, as I am known to be very aggressive to anyone who I perceive to be less than symphathetic to Daniel. I rang them back to check when they are indeed open - I think the guy might have realised his mistake, as he was really helpful after that.

Next step - changing our booking with Travelodge. Those of you who know me will know that I squeeze every penny out of every pound we earn. So of course, my Travelodge booking is for a non-refundable sale room. To be fair to Travelodge, they were happy to change the booking, as long as I could find a room in the same hotel at the same price. This is not possible, so I offer to pay the difference in rate. Can't be done.

Daniel is really looking forward to York, and we forked out a lot of cash for passes to let us in to all the attractions. I didn't want to see him miss out on this, so the booking had to change. In the end I found a relatively cheap room and booked for different days, but I cannot be refunded for the original booking. Should I have taken out travel insurance? Perhaps, but most policies do not cover MS. This is something I need to look into.

I am desperately trying to keep life as normal and fun as possible for our family, but I feel as though I am banging my head against a brick wall.

Off the pills - on to the next hurdle

Hurrah - Daniel is now off his steroids and no longer wired! Fantastic timing, as we have both had our flu and pneumococcal jabs this week. For some strange reason, these seem to have totally tired both of us out. Still, got to be better than getting the illnesses themselves!

Feelings taking me by suprise - again

Imagine walking down a supermarket isle, and then for no reason what-so-ever, you start to feel very scared. Happened this evening in ASDA. Took me by surprise, I find supermarkets difficult, but it's normally OK when they are quiet. Wouldn't normally publicise something like this, but I think it happens to a lot of people, so I've decided to share it. So, if it does happen to you sometimes, you know you're not the only ones!

Tired but wired

At the moment I am living with the Steroid Monster. He is loveable and cuddlable, but gosh is he grumpy! Understandable, he is coming to the end of a five day high dose course of steroids. The side effects seem quite strong and varied. Don't think it would surprise me if he broke out in green spots next! 'Tired but wired' is his description of how it feels. Let's hope these steroids kick his relapse into the next decade!

Chester Zoo is amazing (and so is my husband)

For my Daughter's birthday in June, we asked family to put some money towards a zoo membership. We live really close, and we thought it would be the ideal present for her, as no matter our finances we could have a family day out on a regular basis.

At the time, my husband thought he had sciatica, so we had no idea that he would develop mobility problems. Almost as soon as we purchased our membership, his condition deteriorated. Last weekend we went to Angelsey with some friends, and a two minute walk at toddler pace along the beach left him in pain and needing to sleep. Days out as a family are among the things at the top of my list, but I didn't feel able to suggest using mobility aids at this early stage.

Yesterday, my husband suggested going to the Zoo. He phoned them up and told them about his mobility problems, and they arranged for a scooter. We parked right next to the entrance in disabled parking, where there were plenty of spaces, and the scooter was waiting for him just past the entrance. When I saw it, I had to hold back tears, as I think my reluctance to speak to him about mobility aids is also down to my unwillingness to accept his illness.

We had a fantastic day out, saw jaguars, monkeys and giraffes. I am so proud of him for taking what must be a huge step, and I am so grateful to Chester Zoo for having such well thought out access arrangements.