Interrupted

Challenging Situations, chronic ilness, Drugs and medication, Lifestyle, Uncategorized

It’s funny… the minute my life began to gain momentum – I started to dream about all the possibilities and the good things I could do for others – was the moment I was interrupted. 

And not in that brief way that you get interrupted by a car horn or a low flying bird, a gradual interruption that demands to be noticed. 

It happened in two ways. Two ways that are so different from each other that it seems unbelievable that they could have a similar effect. Both have helped me and one has hindered me and I don’t know what I would be without them. 

To me, they are both male, but one is beautiful and easy and steady and the other is tumultuous and demands to be attended to in every way. 

They are both constant and cannot be escaped – one I would like to and the other I would never dream of it. 

They both inspire me to be a better person, in more ways than one. But one does that in spite of its constant need for attention, adjustment, discipline and correction. 

One takes me away from toxic substances and one inextricably links me to them. 

One I have chosen to be with forever and both have chosen that of me. 

Sometimes I wonder if I could have had one without the other, whether I would still be wishing I could do more in life if your limitations had never been placed on me. And if they suddenly disappeared would I actually achieve it all. Maybe one day we will find out. 🙂 

One interruption was perfect and rebuilds me every day and the other slowly continues to chip away – I just hope we can keep up 🙂 

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MS Society Information Day – Taunton, Somerset

Challenging Situations, chronic ilness, Uncategorized

This was my first day of this kind – obviously, as my diagnosis was so recent – and I didn’t really know what to expect or what I wanted to get out of it, just that I wanted to see what it was all about.

Our lovely friends, Dee and Tucker, had invited us to go a few months before and offered to drive us down – it seemed like the perfect opportunity to spend some time with them and get some more information around Multiple Sclerosis.

I didn’t know how it would feel to be around lots of people with the same disease as me. Previously I had only ever knowingly been in a room with one other person at a time with MS, so it intrigued me as to how it would feel knowing that most of the people there would have been through, or are currently going through, similar issues to me. Obviously it effects everyone in it’s own unique way but there are, ofcourse, similar threads of themes weaved in to each person’s story.

It actually felt really good knowing that everyone there would just get it. If I got an attack of the shakes or fatigue, nobody would wonder what is wrong with me, they would understand. That felt pretty cool actually. 🙂

The talks were really interesting and informative and delivered by people who were very passionate about making a positive impact on the lives of sufferers. Either by researching different ways of managing the symptoms or treating the disease itself. It felt good to know that masses of work is going on all over the country trying to expand on the very limited knowledge that we already have about it.

The talk about mood & cognition was especially good for me. It was great to hear an obviously very qualifed and experienced psychologist stand up and confirm that actually I’m not going mad, MS is not just a physical thing – it can play havoc with the signals and chemistry of the brain. I mean, I already knew this, but seeing someone actually say it out loud in those terms made me feel better about it – It’s not just me then…

They provided a lovely lunch, all free, with so many choices! There were also refreshments after each talk, giving people an opportunity to meet others and network.

We were told about all the new treatments that are in the trial stages right now. There are quite a few exciting things that should be cropping up in the next few years, including the stem cell stuff that was covered in the Panorama program a few months ago.

They had a fantastic amount of free literature available, every kind of booklet you could ever need! Even a free MS Exercising DVD with Sally Gunnall. I mean, what more could you ask for?? 🙂

All in all, I would highly reccomend these MS Society days – if you have MS or know someone who does it will definitely be very informative and give you the chance to meet other people in similar situations. This can be a great way to get advice on all sorts of things surrounding venturing into the world of MS, and a great support when needed.

If you would like to find out about events near you, head over to www.mssociety.org.uk

Please get in touch if you have any comments or experiences to share 🙂

 

A suspected relapse? 

Challenging Situations, chronic ilness, Lifestyle, mental health, Uncategorized

I always thought when I had a relapse of my ms it would be so clear and obvious that there would be no question around it. But I have realised that isn’t the case – for me at least. 

When I was diagnosed I had it in my head that things would die down to a low, manageable level and then stay there until some large event of pain or numbness etc. would signify that I’d had a relapse and needed to look at reviewing my medication. The thing is, with regards to symptoms, I have found them to be pretty much ongoing. I have just found ways of managing them and managing my life around them. They do fluctuate, week by week, day by day, but they don’t seem to really ‘get better’. Not yet anyway. Obviously it’s only been 7 months since I was diagnosed so this could all change. 

So relapse (at the moment) for me is about new pain or symptoms that last more than 48hrs. Over the weekend and the beginning of this week I had new pain and loud noises in my head and some pretty heavy duty fatigue – this has been considered, by my ms team, as a suspected relapse. It certainly felt like one.

Another thing that puts a question mark over it is the fact that if you have even the slightest sign of infection in your body or you have a big change in hormones it can cause unbelievable havoc with ms symptoms. If something causes your immune system to increase its activity, even slightly, it increases the number of those troublesome cells that attack the nervous system – causing the increase of problems. For example if my bowel disease acts up I can almost guarantee I’m going to have a tricky time with me. 

I am learning all of the time about my ms and the way it affects me day to day – and mainly how changeable it is! I am endlessly fascinated by my mind and body’s ability to heal and bounce back from all the stuff it has to deal with. 

Will I ever have a week with no fatigue or pain again? Who knows – I think it’s far too early to tell. I know I’m doing everything I can to help it so just got to try and keep the positive thought processes going and allow myself time and space to feel all the emotions that go with it. Always trying to be kind to myself and shrug off the highly ignorant judgement of others! 

Would love to hear if anyone else has experiences with chronic illness they would like to share and please get in touch if you need someone to talk to about stuff – I know it can be difficult to share with the people you love. 

Thanks for reading! 🙂

Airport Special Assistance – the return trip

Challenging Situations, Uncategorized

After my, less than enjoyable, experience with Bristol airport special assistance I was very interested to see what the return journey would be like. The Irish are well known for being more friendly and relaxed, Dublin airport did not disappoint. We were able to drop off our bag with Ryanair, no matter how early we were, whereas, in Bristol, we had to wait for a specific time. This meant we couldn’t go through and have a proper meal until much less than two hours before and resulted in us having no time to do anything but grab a snack. 

During our bag drop off (in the separate, fast track special assistance bag drop area) the lady from Ryanair didn’t make me feel like I shouldn’t be using a wheelchair – if she thought it she hid that very well!

The man at the special assistance desk was polite and lovely. He was going to get someone to push me through security, etc. but G was happy to push me so we said we didn’t need any help with it. He checked a few times that we were absolutely sure and gave us well explained, clear directions on where to go and what to do next. 

After getting some food and buying all the relevant bits and pieces, we headed to our gate and the loveliest Irish guy pushed me out to the plane and waited with us until we were allowed to get on. He was chatty and interested in our trip, where we had been etc. 

Bristol could learn so much from Dublin Airport! At no point did I feel like an inconvenience or like they didn’t believe my need for the wheelchair. 

I hope Bristol Airport take my complaint seriously and get back to me very soon. I would hate for someone else to feel the way I did on the way out to start my holiday. 

To see what I wrote about that experience, please take a look at my previous post. 🙂 

Thank you for reading – hope you are all enjoying a lovely weekend! 

Bristol airport special assistance – didn’t make me feel very special!

Challenging Situations, Uncategorized

We had just checked in our bags when we decided to head down to the special assistance desk so that we could start the journey through security and hopefully get something nice to eat before our flight to Dublin.

We use special assistance at the airport for a few different reasons, namely –

  • With my MS, fatigue can strike at any time. I can be feeling fine one minute and then completely hit a wall…this is not conducive to a successful airport experience.
  • Standing in a queue in a stuffy environment can also make things worse, let alone being on my feet for that long.
  • Other pain related issues – I won’t bore you with all of the details!

Now, I should say, when we were checking our bag in, the lady was visibly surprised that I had ordered special assistance. She said “you? You are needing a wheelchair?” It just seemed like she thought I was being ridiculous. Obviously, because I have both legs working, she felt I didn’t need one…

Once we had reached the desk, I picked up the phone to call someone down to help me (why nobody mans the desk I have no idea, it doesn’t bode well really). The lady that answered was so rude! She asked if I minded going through security and coming to the second desk up in departures, I replied by asking if that meant standing in a queue for a while. She ‘huffed’ and said “Oh just wait there, I’ll send someone.” What a ridiculous question! I have ordered special assistance because mobility is often an issue for me and then she gets annoyed that actually I would quite like the entire service that is usually on offer!

It doesn’t end there. There were 3 other people there. The woman who came down was rude to all three of them and made us all feel like a huge inconvenience. When she eventually came to speak to us she started by saying “If that woman goes off at me anymore I am going to hit someone I swear” she then went on to tell my partner that he had to push me – even though we had 3 bags that I had to balance on me! She didn’t tell us where we needed to go or how to get there. We had to ask for ourselves. I was really upset and frustrated at this point.

When we finally managed to make it through security and get to the departures office of special assistance – the woman behind the desk didn’t even look at me or make eye contact when telling me the time I needed to get back. People in the office were really unwelcoming and were talking loudly to each other during the time we were in there.

Because of all the messing about we had no time to even get a meal before I had to be back at the office 45 mins before my flight.

It completely ruined the experience for me. Why would they have people completely lacking in warmth or empathy working in that job?

I’m excited to find out the delights that await me when we fly home on Saturday night.

Does anyone else have any experiences with airport assistance?