My MS conference weekend 2018

So the national MS 2018 finnaly arrived !!! On Friday we made our way to Athlone via the train …… and a little help from Google maps.

On the train down the other half had bought me a train beer and it was actually a craft beer supporting MS. It was quite nice 🙂 the hotel turned out to be a short walk from our hotel. We checked in and were amazed by the room as it was huge and so modern. After awhile we checked out the town and headed back to the room to get ready for drinks and dinner with some of the other bloggers and their other halfs.

Of course in true Katie style after dinner I had to leave the table as I was feeling unwell and unfortunately I was sick *oh the joys of this illness*. To be honest I have been dealing with an illness for the past week and a half and I think it might have had something to do with it. That night the room was like an oven and I just couldn’t sleep which didn’t help the sickness either.

The next day was the conference and the bloggers were tasked with live tweeting about the conference. I had the phone in once hand tweeting and then a notepad in the other scribbling down notes and bullet points. I learnt quite abit but aside from learning alot I just enjoyed seeing my friends. I just wish so much that I wasn’t sick.

I do want to get more involved with the ms community and I feel by going to these events this is how I can achieve it. I’m hoping maybe in the future to do a blog on what I learnt at the conference if anyone wants to hear about it ?

On the train home I was so tired from the fact I got no sleep the night before that I actually managed to fall asleep without trying. *oh so bad*

Now I’m off to relax and try and get better as I’m still sick. *yay* and the house heating is broken so I am freezing. But until next week unless my fingers freeze I will chat to you then !

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MS Weekend !!!

This weekend the national MS conference 2018 will take place in the Radisson blu in Athlone.

This will be my first conference that I am going to and I am attending as a blogger for the MS Ireland “MS and Me blog” team. I am super excited Not just for the conference but also getting to see some of my fellow bloggers from the team.

We are heading down on Friday and spending the night just because the conference starts very early on the Saturday. Heading down early on Friday means i get to relax abit. As I mentioned in my last post the last few weeks has been pretty horrible and it has just been one thing after another. Things still are not sorted and are no where near fixed yet so this weekend break can not come soon enough for me! I’m hoping that while learning at the conference that I will be able to relax aswell.

Friday night I have planned to meet up with some of the members of blogger team that I have grown closer too since the last ms meet up. We have planned to get dressed up and head to the bar in the hotel and eat alot of food and drink some cocktails. I truly can’t wait !!! *not going to lie the brownie with ice cream is calling me*

I started packing my bag today mainly cause I hate doing and planning things last minute. I have a very fancy dress packed *starting to think I’ll be over dressed …..* I read a tweet recently from someone who was cleaning out their late mothers house. They said that the mother had loads of clothes that she used to keep up for good wear and now she was gone and wouldn’t be able to wear them. It made me think and I’m going to start wearing my *good* clothes more often because what’s the point in keeping them?.

I will be updating on what happened at the conference in next week’s blog. But if anyone wants to watch the conference it is being live streamed and a link can be found on the MS Ireland website.

I’m Back !!!

Hello everyone, I’m sorry for the lack of posts over the past few weeks. But I am back and ready for more MS Action!!!

I’m not going to lie the past few weeks have been horrible. For me it just felt like it was one thing after another and it was too much to focus on aswell as writing a blog.

Are things any better ? The answer is No and they are nowhere near better and to be honest the stress has really gotten to me lately and I am not the same person I was because of it.

Over the last few weeks I have relied very heavily on a few of my friends and I have been trying to focus on other things. I just want to say a MASSIVE THANK YOU to Grace as I swear I feel for her for having to put up with me crying my eyes out on the phone to her.

Lately I have been trying to work on myself abit more and have started to get back into meditation again to try and clear my mind. Aswell as the meditation I have gotten myself a treadmill and I’m starting to really enjoy it! *which I am really shocked at*

I am currently undergoing more medical tests at the moment and it really hasn’t been easy but I think it’s just an added extra on top of all the drama. I have been to the doctor for examinations which resulted in a massive blood test last week that I am currently waiting the results of. And next month I have an appointment in the hospital for an ultrasound.

So yeah to put it lightly it really has been a crap few weeks.

BUT I do have some slight good news which is my lately MRI results came back showing there is no change in my MS meaning it is holding stable and that the medication is doing it’s job !

So I am back in action and hoping to keep this blog going and trying to get it to grow 🙂

So I will chat very soon !

I Can’t Be Positive About My MS.

I Can’t Be Positive About My MS.

I wrote this post when I was in a very bad and low mood about my MS. ( I actually wrote it just after my post about my up coming MRI and it got me thinking about my MS) so this post is just basically a rant I haven’t read over it and it is unedited. so please excuse spellings and grammar.
this post is basically just how angry and low I was feeling at the time.

I have now officially been diagnosed with MS for over 2 years and living with it for over 3. However one of the things that drive me crazy about living with MS is that people try to out a positive spin on things. Or people telling you to think positive about the scans or MS or treatments etc.

What I really want to do when people tell me this is to tell them to cop on to themselves. For me my MS is not a positive thing in my life. So please can someone tell me what I am to be grateful to my MS for?
Should I be thankful that I had my first attack at 21 and have been left with slight nerve damage in my legs because of it?
Should I be grateful that ever since that attack that I have been in pain?
Or how about the fact that I work my ass off in college to get my degree and create a name for myself in the baking world only for MS to creep up and leave me so weak in the legs and tired that I can’t do bakery work anymore.

Should I be thankful that I get to watch all my old friends carry on normally with their lives by travelling, working at their dream jobs or having kids but I’m sitting on the side lines forgotten about?
Or how about the nights that my old friends are going out clubbing or socialising but I don’t get invited anymore because we are now too different.

Should I be positive about the fact that I spend every single day worrying about my MS. Is my medication working or is my MS getting worse. Or my favourite one is how bad will my MS be in the future?

Should I be positive that I get to inject myself with my medication that makes me feel like crap and leaves lovely injection site marks all over my body? Injection marks that itch and burn for weeks till they are healed.

Should I get to be positive about the fact that for the rest of my life I will have to attend hospital to try and monitor this disease and hope it doesn’t get any worse?

There is only one thing that I am slightly grateful for is that yes the hospital the hospital were able to diagnose the MS early and start to treat it.

But what gets me is the people who say think positive about your MS everything will be fine. NO with my MS I think realistically and that suits me.

So No I can’t be positive about my MS. MS has taken so much from me and I just can’t be positive about that.

My Upcoming MRI Scan

Once a year I get to have an MRI at my hospital that is treating my MS and this upcoming Monday is MRI day.

Most people that you speak to about MRI scans are not positive about the procedure but I myself don’t mind it at all to be honest. To me my MRI are of my brain and spine and usually last about 45 minutes, once I’m in the machine I tend to go into my own little world.

The only MRI’s that I had bad experience with were my second and third. During my second I had been called into the hospital to have an MRI that needed to be done ASAP. The hospital wouldn’t tell me why I had to come in so suddenly after only having my first MRI done a few weeks before that.  On the day of my second MRI I was convinced that they had found something in the first scan and that is why they needed me to have it done again straight away. As it turns out the first scan should of been done with the contrast dye and wasn’t therefore a second scan had to be carried out. But due to only being told this on the day of the second scan and after spending weeks thinking the worst I was in a bit of a state. The scan started with two nurses and my mother pinning me to the MRI bed as one of the nurses inserted the IV line into my arm. As I cried and screamed the place down ….. did I mention that I was 22 at the time?

The third MRI only went badly due to the fact that I was having a relapse at the time. I was in the process of being diagnosed and was told if this MRI wasn’t any different I would have to have a lumbar puncture done. So I was out of my mind worrying and praying that this scan would show something different which thankfully it did.

Once I was diagnosed and knew how the MRI would go I started to relax on the day. Well once I have the waiting to be called and the IV line inserted into my arm. I go into the machine knowing other than the noise of the machine (which is noisy) that’s all I can hear. For them 45 minutes I am on my own and it is Katie time and I get to nap or just daydream. Afterward I usually go and get coffee and cake with my Mam.

So in a couple of days I will be attending the hospital for my yearly MRI and then will return a few weeks later for the results. Here’s hoping that the scan goes well and I can report my findings on my experience as a positive one.

Here are a few tips on going for MRI.

 

  1. Wear conformable clothes. Don’t wear anything with metal in them as you will have to take it off. Try wearing leggings, t-shirts and a sport bra without wiring and clasps. If you do wear these items they will hand you a lovely hospital gown and all you’ll have under is your underwear minus your bra.
  2. Take out any piercings. Again metal and this machine do not mix
  3. Try and be as relaxed as possible. If they have to keep stopping the machine the longer the scan will take and the longer you will be in the machine.
  4. But you are given a panic button if you do need to stop or get out or talk to the staff in the other room.
  5. Ask for some ear plugs (they usually give them anyway) or ask they to put on music in the headphones for you if you hate the machine noise. You will still hear the machine but you will have something else to focus on.
  6. MRI are your friend. This is a strange tip but just try and remember that during your scan that this scan is designed to monitor your MS and how well your medication is working.

My Holidays

My Holidays

Well by the time this blog has been posted I have been home from my holidays over a week and it sucks! I truly had the best time when I was away.
The last week in June myself and my boyfriend Niall went on our first holiday away together to Amsterdam and all I can say was it was amazing !
We arrived late on the Monday night so we didn’t get to see any of the city. We decided to take a train from the airport to the city centre ( as our hotel was city centre based ). Well I’m not going to lie I hate public transport in general but using it in a country that speaks a different language and also using it to get to a place that I never had been before sent my anxiety through the roof. But we actually managed to get the train to the correct station and once we arrived at the station we used google maps to direct us to the hotel. The trip should have taken 5 minutes however due to a slight wrong turn the maps decided to redirect us and in total it was about 30 minutes before we got to the hotel. To be honest I felt like crying with relief that we finally got there because as I said public transport and not knowing where I’m going is one of my biggest nightmares.

We were given the keys to the room and told it was on the second floor but unfortunately there was no lift to that floor….. yay ! We got to the first flight of stairs and I quickly discovered is that the stairs in Amsterdam are very steep and straight up ! But I managed the first flight then there was a mini flight that was curved and then the flight of stairs to our floor and this flight were steep, curved and straight up it might as well have been a ladder. The handrail wasn’t great and it was that steep that when i got half way up I could grab the top step as my support.

On the second day (which felt like our first) we got to explore the city. After a big breakfast we went for a walk around all the little streets soon we found ourselves sitting by the canal after I needed to take a little break. As we sat there we were looking at all the tour boats going up and down as we saw people in paddle boats. After a few minutes we got up to continue our walk and we ended up finding the place that rented the boats and we decided to give it a shot and ended up taking a boat out on the canal for an hour. I was so scared that my legs would start acting up but to my surprise we managed to peddle that boat around for the full hour. Afterwards we were totally wrecked and had to go and get iced cold drinks to cool down but I felt fine.

In our few days in the city we did a lot of walking around and exploring seeing all the different sights that the city had to offer and I discovered that as much as a beautiful city that Amsterdam was it wasn’t very MS friendly due to the amount of stairs that were everywhere and where very steep.

On the Thursday night it was our last full night there so we had found this little wine bar that was right on the canal so we sat there for a few hours with a glass or two of wine. As we sat my legs were starting to ache but nothing major and when we got back to the hotel the stairs where just a bit more tricky this time. After a few minutes my legs became so painful and the pain was very intense. (my legs are often painful/achy/uncomfortable and every few weeks or months I get the REALLY horrible pain that is so bad that I can’t deal with it) and of course when we were away this had to happen. It resulted in me crying my eyes out for an hour until the painkillers and gel worked. I was lucky that the pain only lasted the hour as sometimes this pain can last multiple hours and I would get no sleep that night.

In all we had an amazing trip in Amsterdam and I fell in love with the city. I felt proud of myself as I did a lot of walking and climbing of stairs on the trip and didn’t need to take as many breaks as I thought I would have. My MS was well behaved and aside from the night of the horrible screaming pain and the odd ache or pain I really couldn’t complain about my MS on the trip.

MS Fatigue

This is a blog a did a few weeks back for MS Ireland as part of their MS and me blog team community. just posting it here so people can have read if they wish.

Read the first blog for MS and Me from Katie St. Lawrence (24). She shares her experience of what it means to have fatigue, how she deals with it and how, thanks to being strategic about rest, energy and listening to her body, life is as enjoyable as ever.

I never knew when I was first diagnosed that fatigue would be one of my biggest challenges in my battle with multiple sclerosis. During the diagnosis process, I was always asked by the doctors and nurses how my energy levels/fatigue were. I never had any complaints.

This changed a year after my first relapse. It was during the summer time when I started experiencing fatigue. I began to notice that the smallest of tasks would leave me feeling wrecked and needing to take a break. Jobs like preparing the dinner or cleaning my room (which never used to be an issue for me before) left me feeling like I had just completed a mini-marathon!

I started to get jealous when I looked around and saw other people around me doing these tasks without any difficulties. I also felt angry with myself when I thought about all the times, pre-MS, when I sat around doing nothing. I could have been enjoying myself! Little did I know then that I would be suffering from what I could only describe as the Ultimate Tiredness x10 for basic tasks.

Katie’s Fatigue = waking up after a full night’s sleep only to feel as if I’ve not had any sleep at all. Or being so tired that I can barely move and have to talk yourself into moving. Fatigue is when a hot shower can drain every ounce of whatever remaining energy out of your body. It leaves you feeling completely shattered and defeated.

Like many people with MS, I have my good days and bad days when it comes to dealing with fatigue. Fatigue is with me all year round but is so much worse in the summer time in the higher temperatures. On my good days I can go most places or do most things without it affecting me too much- only a little bit fatigued. But on my bad days, I wake up feeling completely wrecked and basic tasks almost wipe me out.

Since the first year, I have learned to deal with my fatigue. I’m more strategic now- if I have an event coming up I prepare by taking things easier in the days leading up to it. I have also learned to listen to my body more and if I feel as if I am over doing things, I take a rest or get an early night. While fatigue can be extremely difficult to deal with, I try not to let it rule my life. When I listen to my body, I can manage. Things are very different to pre-MS but despite the fatigue, by making small changes, listening to the changing needs of my body, the most important thing is I still get to enjoy myself.