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
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 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!
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.
This week has been a funny one, I obviously had a horrible reaction to treatment last Wednesday that left me battling severe muscle pain like I’d torn every muscle in my body for about 3 days.
Thankfully that has gone away and now I’ve started taking gabapentin my aching legs have eased dramatically. Don’t get me wrong they still ache but no where near as bad.
I have decided that I need to be kinder to myself, my life was changed forever in May when I was diagnosed and I’m torn between being grateful that I still have my mobility and devastated by the diagnosis. I’m trying to hard to please everyone and be my “normal” pre-diagnosis self. Well that’s going to change a bit, not totally but a bit. I am going to tell people I’m too tired or too sore to do things. It will kill me admitting that to others but I need to take that step. We all do, it’s not selfish it self care.
Everyone of us “people pleasers” whether we have MS or not need to be a little kinder to ourselves and put ourselves first sometimes. Remember you can’t light other candles if your flame has burnt out!
Well everyone I was a little premature posting about day 15 as just after I had my treatment infusion things went wrong. My infusion was done over an hour not 4 like the first one. Once it finished, and I heard the telltale beep of the machine I was relieved….
Then things changed, before I had been unhooked from the IV I felt freezing cold and started to fit. When I say fit I don’t mean the epilepsy variety but all my muscles started going in to spasm, lasting about 5 seconds with a few seconds break. This went on for half an hour or so. I won’t lie I was scared, I was regretting my decision to do the trial and being brave going by myself. It hurt, a lot!
My blood pressure spiked, as did my temp and heart rate. I turned grey! That’s never a good look on anyone!
After the half an hour violently having spasms I feel like I have ran a marathon. Anyone who has full blown fits, you have my complete admiration!
The drs and nurses were great, helped keep me calm and kept me laughing, which for anyone who knows me, knows that’s the medicine. I am so grateful to them! They did scare me by telling me they might have to keep me in but assured me it would be like a sleepover. Luckily my temp has come down to more normal levels as has my blood pressure and my heart rate and I was allowed to go home (with a promise that I would text the nurses when I was home safe, it was like a Peter Kay show with me promising to give them 3 rings to know I’m safe. So I am currently tucked up in bed having a minute. Sleep well everyone and remember to like my Facebook page xxx
Back at the hospital today for my 2nd round of treatment (apart from the tablets, remember the blind study bit from Day 1? If not read back)
Started with the usual giggles with the nurses and then onto the urine sample. Once they knew I wasn’t pregnant, the trauma of the blood tests starts again. 3 attempts again but they managed to get a viable vein in my arm which is good.
ECG next, made complicated by broken clips so took all my sticky things off only to find new clips so sticky things back on for 2nd attempt. Guess what I managed to stay still, Bonus!
Steroid infusion and oral antihistamines before the infusion of the treatment drug.
While I’m sat here waiting for my drips to finish I wanted to talk about hobbies. I love a good fad, a fad diet a fad drink or a fad hobby. I go all in for a few months, spend a fortune then lose interest and I am not ashamed! Anyway my latest fad is Diamond Paintings, (like the picture at the top of this post) anyway it involves sticking tiny gem things onto a picture. I love them! They are good to use to relax, will hopefully help me maintain my dexterity in my hands and my cognitive function.
So, tell me. What are your hobbies?
Back at the hospital today. It was ok apart from being part of a horrendous week.
Let’s start from the beginning, Monday is always my busiest day at work, Tuesday I took the day off to revise (Will explain later) and Wednesday was day 8 of my trial.
Thankfully today was only a quick blood test and a physical. 3 attempts at a viable vein again! But I have now started a competition to see who can get it 1st time so happy days lol.
Anyways after my trial appointment I was straight back to work to hear a grievance.
Thursday contained a 3.10 min exam, an optitions app and a drs app and then back to work.
Today I have been exhausted beyond words. Everyone here needs a badge to wear daily to remind themselves and others that that they are warriors regardless if they fought the war against the world or the war against themselves, we are all doing our best xxx
Just search MS: Trials, tribulations and no expectations
Thanks for reading
Hugs, we all need them. They make you feel supported, loved and cherished by those nearest and dearest to us.
That is, unless you have MS. When a hug means something completely different. They are terrifying, painful and just unwanted. When I heard about MS hugs, I thought “Finally a positive to this blasted disease, I nice feeling of being hugged!” that’s until I experienced my first one! I didn’t know what was happening the first time, we all experience them differently. But for me, it felt like I was wearing a corset, it hurt to move, to breathe and even hurt to sit still. So there is no way to ease it. I sat it out, refusing to google Dr myself as I have fell foul of this before and googled headaches and convinced myself I had a tumour or worse! Lets be honest no one needs that added stress of made up scenarios when we have so many real ones to deal with!
Unfortunately for me they are becoming a regular fixture in my already mixed up and jumbled life. Along with falling over and not being able to get up!
Trust me, I have tortoises so I know how ridiculous I look lying there trying to work out how to stand back up. Especially recently when it happened after going to the loo! I fell on all fours, bare bum in the air and had to call my partner for help! I was sure he was just going to set his wine glass down on my back and use me as a coffee table! (Thankfully, he didn’t although he did nearly wet himself laughing at the sight before him)
I am just grateful it didn’t happen at work, because that is something that would require sending the staff who helped me to counselling!
The moral of this rather rambling story is, well I am not sure. Having MS hugs hurts, but for those of you who are suffering, try to stay positive and if your lucky enough to have someone to give you a hug all the better! If not, I am sending you all a virtual hug!