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.

https://miles-for-ms-2019.everydayhero.com/uk/rebecca-1 #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.

New Year, New Me. Just kidding!

Well folks, Christmas is over and the new year is upon us. Did anyone else promise themselves they’d try harder at something? Give something up? I did, I do every year!

Let’s talk about what I decided to do.

1) Look after myself more. Sounds easy yeah? Well let me tell you it isn’t. I was lucky enough to receive bath bombs for Christmas and thought I would treat myself to a bath, face mask and hair mask once a week (as well as my usual showers obviously) It’s not a difficult thing to do, it may help my legs and my sleep pattern.

Did it? In a word, No! It did not, my legs felt a little better during the bath but then felt like I was walking through cement once I had gotten out. As for my sleep, I can honestly say I sleep like a baby. A baby who is teething, has nightmares and generally wakes up every 10 mins. But that’s nothing new for me.

I won’t give up though because I have found them relaxing even if not the cure all I was after.

2) I will eat heathy. This I am managing to be honest but I only started this 3 days ago and it hasn’t been the weekend yet. Fingers crossed I can stay strong.

3) Giving up smoking (well swapping cigs for a vape) again it’s only 3 days in and I haven’t needed bail money yet so that’s all positive.

Resolutions are hard to keep because let’s be honest they are not easy. But neither are our lives living with MS. Apart from all the symptoms that we hide willingly or that simply aren’t visible, we have to cope with the lack of understanding of those around us or the people we meet. We have to go for uncomfortable and sometimes terrifying tests and countless calls and visits to medical professionals. We put on a brave face and a fake smile when inside our bodies are screaming in pain, failing us or generally not being very nice to us. We struggle through the fatigue and the insomnia.

Why do we need more difficulty in our lives? Why do we try to change things about ourselves? I don’t know about you, but for me, it’s because I want to be a better and healthier person. But sometimes I need to remind myself, that I am not doing a bad job already. None of us are, we are courageous, we are strong and we will continue to fight on, even when we think we can’t!

So everyone reading this, keep being awesome!

Why me? Well why not?

When I was first diagnosed I struggled a little with “why me?”

Why do I have to be cursed by this life changing illness without a cure in sight yet. But, as I have come to terms with my diagnosis, the constant pains, strange sensations, numbness and other effects, I have realised; why not me?

Don’t get me wrong I’m not a horrible person, but I’m no saint either. If it had to be someone I knew, who would get MS, I am glad it was me. I don’t think I could cope with seeing a family member or friend go through it.

I am lucky to have people in my life who make me smile and laugh, when I am not in the mood too. To take my mind off the pains and laugh at the many embarrassing but hilarious things that now happen to me. I am lucky to have the NHS who take care of me when I need it. However I must be costing the NHS a small fortune recently as in the month of December I have 8 hospital appointments. Not all MS stuff, there are some cardiology and endocrinology appointments thrown in for good measure but let me tell you having that many appointments with different doctors at 3 different hospitals while trying to work full time and do my Christmas shopping has not been an easy task! I’m tired and grumpy and not at all in the Christmas spirit.

There have been a few highlights this month, of a lovely family meal for my aunts 80th birthday were I caught up with all the family. I have taken my nephew to watch a special screening of Polar Express and even met Father Christmas! Plenty of pub teas and dinners (I deserve it after all the hospital appointments lol)

I have 3 more hospital appointments and my big brothers birthday next week and then I can relax for Christmas, so if you’re sat there reading this, thinking why you? It’s because you’re strong enough to deal with it and you wouldn’t want anyone to go through it

Merry Christmas all, enjoy it and remember to rest when you need it! You cannot pour from an empty cup

My first relapse since diagnosis

I am writing this from Salford Royal, the hospital that I am doing a research trial for. I am having my first relapse since diagnosis in May this year.

It started a little over a week ago, the burning hot pokers running through all the bones in my right side. I hoped it was a twinge. It wasn’t, soon the pain was joined my numbness and weakness. After a couple of days limping around work I phoned the research team, they booked me in for two days later.

Off I went to the hospital for the dreaded examination and blood tests. One vein dried up so had to try another. key 2 bruises on my arms. The dr told me he thought I was relapsing. I will be honest I was relieved. Imaging that. Relieved to know you’re in relapse! Crazy, however I am sure many of you will understand that a relapse means it should go away, not stay with me full time. Don’t get me wrong I was sad too because let be honest here, a relapse means more damage to my brain or spinal cord, or both.

The dr told me I would need to have a EDSS test with another dr to confirm my relapse and treatment, this was a Thursday and I was booked in for the following Monday.

Another trip to the hospital for more tests, more bloods cause the last sample was insufficient for the amount of tests they were doing. This time bloods were taken from my hand as my arms were still badly bruised from Thursdays attempts.

Off I toddled back to work. The following day I got a phone call saying I was relapsing for sure so would have to go back for 3 days of IV steroids, starting tomorrow. God help me. When I had the steroids in hospital after my diagnosis, my arm swelled up and I felt like I was being pumped full of acid. I was terrified but I knew I had no choice.

My first day on steroids was a little bit fraught, I had to be at the hospital for 8am to see my dr. He explained what would happen and the nurses kept me entertained for my little stay. Once I was hooked up, the horrible metallic taste came, then the headache. As well as another bruise developing on my other hand from the cannula. But no swelling and no pain. It turns out when I was in hospital the IV wasn’t in my vein properly and that may have caused all the trouble because it leaked as well.

I went back to work after my steroids, stupid I know. But in case you haven’t read my other blogs I am stubborn, too stubborn for my own good sometimes, I’ll be honest. But if it keeps me fighting I don’t care!

9 am the following day I’m scared of where the drs will be able to place another cannula as now I am starting to look like a massive junkie! She decided to use my wrist. I even watched her do it. That’s a massive step as before I began my journey with MS I had panic attacks and fainted when having needles. I was so proud of myself! The infusion passed without much trouble and I managed to use my time constructively and did some online shopping for Christmas! I went home and spent most of the day in bed after booking the day off work.

Today, as I am sat here writing this, is my third and final day of Steroids. I still have the metallic taste, the headache and have developed a bad case of insomnia but what other choice do I have. Brave the relapse symptoms or brave the side effects of the steroids. I choose side effects.

Why? Because it’s the lesser of two evils. My walking is better and I am getting stronger. Yes the side effects are bad but I still have my independence.

Today it has taken 2 attempts at finding a vein, all my good veins being used up already. My wrist was no good so another vein was found in my hand. Hopefully they won’t bruise. But knowing my luck with these things I am going to be one big bruise when they all join together!

Thanks for reading and remember we can get through whatever this horrible disease does to us, we may not feel like the same person, we may walk funny or not at all but we won’t give up!