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!

Enough is enough

This last week has been tough, I had a really busy week at work, netball was cancelled so I thought I’d go for a few runs. I didn’t, I stayed at home and felt sorry for myself.

I felt sorry that I’m always so tired, I felt sorry that I’m always in pain, I felt sorry for the fact the pain medication makes me eat more and feel tired. I put weight on and feel worse about myself. It really is a horrible cycle.

Today is the start of a new week, I new outlook and a new me. I am determined to climb out of this darkness I have found myself in. I won’t be beaten, I will fight on.

Sure my legs feel like I have been run over by a train, I’m getting shooting pains in my arm and have had a few hugs over the weekend. But I won’t let this stop me, it won’t hold me back. I will keep on getting right back up every time MS decides to knock me down.

This week WILL be better, I will eat well, exercise, allow my body to recover without feeling guilty and more than anything keep that smile on my face!

Keep fighting all, whatever your battle maybe xxx

Only I could hurt myself this much!

These last few weeks have been tough and I have pushed myself more than I probably should, but as you probably have guessed by now, I can be quite stubborn and I am refusing to let MS rule my life.

I went to netball twice last week and looked after my 2 year old nephew twice. I have walked more, used stairs rather than lifts and parked further away from places I went. All in an attempt to keep fighting and eating better in attempt to lose some weight.

What have I learned? It hurts, everywhere! I have had pains in my legs that feel like someone is stabbing my bones with red hot pokers. I have had weakness in my arms and shoulders so much that I struggle to dry my hair. I have felt dizzy and sickly, fuzzy headed and tired beyond belief.

Will I give up? Nope, this week I am going to continue my mission and fight until I fall over. Then I will pick myself up and fight again!

MS takes so much of our lives away from us, it threatens to take your spirit and your fight. Don’t let it, it’s ok to be down in that horrible downward and dark spiral, but remember, you don’t live there, you live in the light. So when you are ready climb back up, brush yourself off and keep living xxx

I’m fighting to stay the cool aunt to this little one!

I’ve overdone it!

I cannot tell you all how exhausted I am, I have over done it these past few days and although I had a lot of fun I am paying the price today.

On Wednesday I went shopping with my mum and played netball at night, I was feeling ok.

Thursday mum, dad and I decided to take my 2 year old nephew to Farmer Teds. We looked at the animals, my nephew wasn’t really feeling it so off to the play area we went. Me and him climbed the “big kids” play area which involved a lot of lifting him onto bits he couldn’t reach. Which considering I am like 5 foot 2 is quite an achievement in itself! We went down slides, crawled through tunnels and walked over rope bridges. From there we went on the bouncy pillows. which as you can see is a massive bouncy pillow that had us jumping and trying to do “tricks”. At this point I knew I was pushing it but how could I say no to that little face.

Tobogganing came next, followed my running up and down a hill with a football.

After all this we went to the soft play area, yes I obviously lost my mind at this point and started climbing through the toddler section and trying to not get stuck going down the slides.

Back home for tea, bath and then waited for my brother to pick him up.

I had an awful nights sleep with spasms in my legs and arms and tingling all over.

Today I feel like my batteries have fell out and rolled away just out of reach. My legs are heavy and I have pins and needles. My arms feel like they have weights attached to them.

Was it worth it. Hell yes! On good days I will push myself like a lunatic and on bad days. I hope to try and remember it’s ok to rest and recover so I can do it all again, I will not be beaten I am a warrior!

Let’s talk about sleep

After a busy weekend spent with family and friends I am glad I booked a week off work. I spent Monday chilling at home ready for going the hospital on Tuesday. A quick appointment with a physical examination, urine test and bloods. Good news only two attempts to find a vein, getting better, you never know soon it may only be one attempt so I can stop freaking out. Don’t get me wrong my crippling fear of needles is getting better. I no longer have panic attack’s or faint. But I still can’t watch and tend to hold my breath. But I am getting better.

Anyway, after the hospital I went home and needed a little rest, all my spoons used up already and it wasn’t even 11am. Not great. I managed an hour and then woke up. It got me thinking that sleep and exhaustion is MS’s biggest joke. No matter how exhausted I am, I don’t sleep well.

I have never slept through the night from being a baby and it drove my parents to distraction in my younger days. Now it drives me to distraction.

I can be so tired that I can’t even get undressed for bed and collapse on top of the covers and need a rest before I work out how to get underneath my covers, but then the important questions pop into my head. Like do penguins have knees? What did moths fly towards before electricity? And talking of moths, where do they go during the day?

Anyway I can’t fall to sleep, it takes 400 position changes, random twitching and eventually I will fall asleep after a few hours. Oh the bliss of sleep, until I wake up around 2 hours later and the process starts again. It drives me insane. I see near enough every hour during the night and get out of bed looking like I should have a role on the walking dead. Which is great at this time of year and will save me money on Halloween make up, my tired legs making me walk funny so no need to act either. Ooh a positive note for MS, makes Halloween less expensive.

I have an idea to help us all through the day, we are all used to having infusions of steroids and medication so why can’t we have the same for caffeine? Just imagine it, a drip with your caffeine of choice, coffee, red bull or just straight caffeine! Anyone who knows me know I love my caffeine in any form and it does help me get through my days at work.

My question to you is, do any of you have trouble sleeping or have a magic cure? Please let me know so I can stop being an permanently exhausted pigeon.