Stubbornness, is it a curse?

I am over half way through my “Miles for MS” challenge of running 70 miles in May. I’ve ran 49 miles and played netball every week. It hasn’t been easy and I am in pain everyday, with every step and every movement of my legs, but I am stubborn and won’t give up. I have found a wonderful running group on Sunday mornings and I am starting with another one tomorrow I think.

I have received so much support from everyone, it’s been humbling to know how much every one cares and shows that with kind words and their hard earned pounds.

I have even been in the local paper and have asked to go into a school to talk to the kids. I have even had an article about me on my works social media platform which has a global reach. I can’t believe how much interest this challenge has received. The problem is, it’s fuelling the stubbornness. Which means despite the pain and discomfort, I’m feeling more determined than when I started this.

So my question to you all is, should I rest and have to up my mileage everyday for the last week or crack on? I know which I will chose! Crack on!

What an amazing week!

As you may remember in May I started a challenge to raise money for the MS Trust. I am planning on running 70 miles in May. Please remember my main symptoms are in my legs and I don’t run. So quite a challenge.

I started on Wednesday by running after work on the golf course. I soon discovered this wasn’t big or clever as it is uneven and hilly. I also played my weekly netball game. Day 2, I ran over the country park which wasn’t quite as hilly but still uneven. By this point my legs felt like I had hot pokers instead of bones. Day 3 I was on annual leave from work so went for a run around my home. Managed a lot more than I expected too out of sheer stubbornness. Day 4 consisted of a short run to stop my legs seizing anymore as I had signed myself up to a 5k for a local mental health charity. I hear you say “why on earth would you do that?” Well all I can say is I am equal parts stubborn and stupid!

Here we are on Day 5. I completed the 5k and got some bling and was supported by 2 lovely friends, Jodie and Laura who kept me laughing when I wanted to cry. By the end of the race my legs were agony and one leg had even gone numb but I managed a sprint finish (kind of) and collected my medal.

I cannot tell you all how proud I am although wish my legs would have allowed me to do better.

Now for a Sunday roast, glass of wine and a nice hot bath. In preparation for the next 7 days of running

What a crazy week!

How amazing was the weather over the bank holiday weekend? I loved the sun. I know for some the heat aggravates symptoms, but for me the warmth helps.

This weekend has been somewhat different with a storm hitting on Saturday. But it gave me an excuse to relax on Saturday which was really needed, I stayed in bed o my leaving to find food. It was great and just what I needed.

You see, my legs have been really sore and twitchy. I have had my baclofen upped from 30mg a day to 100 mg in the last month. It’s made me feel like a zombie from the walking dead but hasn’t helped my sleeping.

On Sunday I took my nephew Edward to a 4th birthday party. He loved it and so did I. I ran around and danced with him, climbed under tables and ate lots. It was such a good party. Even Spider-Man and Ariel from the little mermaid were there. He was a little bit scared of the Spider-Man, (who looked like he had let himself go a little after the movies!) I eventually managed to get a photo but only after I picked him up. He looked terrified! I showed him the picture a little later and his response was “I like Spider-Man, he is my best friend” I died laughing and asked if he wanted to go talk to him again and he said no.

I guess he likes the pictures better! Anyway, after the party my legs felt like lead weights with a really deep ache from my hips down. I was exhausted and fell asleep just after my tea. I woke up at half 9 and the last time I looked at the clock it was half 1, up again around half 3. My alarm went off at half 5. Needless to say, work should be fun today. Approach with care and only if your bringing coffee!

Miles in May! Please sponsor me xx

As you all know I was diagnosed with MS in May 2018. Since then my walking has been affected and I suffer pain, spasms and weakness in legs and sometimes my arms too. This is my new normal and to help myself (and hopefully others if you sponsor me) get my head around this diagnosis and how my life has changed I wanted to do something to test myself.

I am not a runner, I never have been but I am determined to do this. I plan on running 70 miles (over 100km) in the month of May.

Please sponsor me and help this amazing charity that gives people with MS hope for a cure or at least a brighter future. #ms #mswarrior #msstrong

What a week (and a bit)

What a week it’s been. I had another infusion for my medical trial which unfortunately didn’t go smoothly. Firstly the ECG was put on wrong so didn’t work, then the sticky things didn’t stick, so I ended up covered in tape.

Then they couldn’t find a vein for my cannula. 5 attempts and my arms in a bucket of hot water it finally worked. The infusion itself went without a hitch, as did the rest of the visit thankfully but was in the hospital from 10 am till 6pm.

I went to Chester for a night away, it was lovely however my MS brain left me without a hair brush but I only discovered that after I had been for a sauna and swim. So I had to dry and straighten my hair using a little fold up handbag brush. In the morning my straighteners would wouldn’t, I tried 3 different plug sockets with a growing sense of dread. Then I realised it was my hairdryer I was plugging in and not the straighteners. So a happy ending there at least.

I went out for a lovely Mexican with my family to celebrate my brother getting a new job. My nephew insisted me and my dad wore the sombreros and who could say no to that little face.

I was also off work on annual leave this week which has been nice and provided me plenty of opportunities to rest through the day as my sleeping at night is constantly disturbed by twitchy legs, needing a wee or just because my body hates me sleeping.

How has everyone else spent their week?

The funny things that have happened to me recently thanks to MS

I don’t sleep well, I never have. But recently its hit an all time high in the hours I spend staring at the bedroom ceiling, and that’s where I am writing from today.

I haven’t had my next treatment yet because the MRI scanner broke so while I am waiting around for my appointment to come through I thought I would write a little list of the silly things I have done and blame MS for.

1) Worked for 3 hours straight on a really complex spreadsheet for work then saved over it and had to start again.

2) I put my knickers on back to front and didn’t realise for most of the day.

3) Left work and walked for 5 mins to my car to realise I left my handbag in the office so had to walk all the way back and upstairs to get it.

4) Locked myself in the toilet, panicking until I remembered I had to unlock the door before it opened.

5) Fell over more times than I would like to admit.

6) Said “your welcome” instead of thank you when being served in the shop. Leaving the cashier looking at me strangely.

7) Put my cup of coffee in the fridge.

I hope these examples have made you smile like they did me. I do find laughter is the best medicine, which is a good job really with what MS makes me do.

Do you worry how MS will affect your loved ones?

I worry. To be honest I worry about most things, I always have.

MS has given me a whole load of new worries, but it also has taken away a lot too. It’s taken away worries that consumed me once. The “Did I come across as stupid in the meeting today?” The “Did I upset them?” When someone didn’t text me back straight away. It’s strange but since my diagnosis, those kind of worries don’t bother me anymore. It’s a liberating feeling and I generally feel happier in my life. I hear you say “wait, what? You feel happier since being diagnosed with the monster that is MS?” You know what, I do. It has put things in perspective for me. I don’t worry about the little things anymore.

I do however worry about how my MS will progress, when will my next relapse be? What will my next relapse be? I could go on, but I won’t. I will let you in on my greatest worries, the ones that terrify me. I’m sure a lot of you will relate, whether that be because you suffer from MS or other physical conditions and to those who suffer from mental health issues. But I also want people unaffected by a chronic illness to know what your friends and family deal with sometimes.

I will give you a few examples. I was diagnosed in May 2018 and not long after went on a day out to the lakes. There were was around 20 of us going up including all the kids. It was a beautiful day and picnics had been made. I was terrified in case I was ill again and spoiled everyone’s day.

I experience the same panic every time I get invited somewhere. I worry that I will be tired and spoil everyone’s day. Or that I will relapse, or worse still, have an embarrassing relapse. What if I lose my vision? What if I can’t walk? What if I lose bladder control? These are all real and all encompassing fears. My worst nightmare would be my illness making my friends and families life more difficult, or spoil their fun. I want to be an active and fun part of their lives and not a hindrance.

Don’t get me wrong, I went to the lakes and nothing bad happened. At Christmas I went to London and nothing bad happened (I did need to go to bed early as I was so tired, but that was ok)

I won’t let my fears get the better of me and stop me living my life but that doesn’t mean I am not screaming in terror inside during the run up and during the trip. But I won’t be beaten!

My next goal is a holiday, even if it’s just a few nights away somewhere. To prove to myself I can do it.