And so it begins…

chronic ilness, Drugs and medication, Lifestyle

Decluttering has commenced.

I started reading Spark Joy and it has inspired me to work towards the house and lifestyle that I want to have. The way she writes makes it sound so simple and cleansing – I genuinely couldn’t wait to start. It’s frustrating that I am so busy and unable to do it very quickly but I’m hoping that I can really make some headway with it during the Christmas break.

I started by bringing all my clothes and underwear into one place and going through them – removing anything that didn’t spark joy when I looked at it and touched it. To begin with it felt strange but after a while you definitely start to realise what gives you joy and what doesn’t. I have so many items of clothing and I am so sick of everything not being able to be packed away in a neat, organised way that is easy to see and make outfits from. I have been getting rid of clothes ALL YEAR! Still I have not achieved my goal!

I managed to chuck away a big bag of old clothes that wouldn’t be suitable to give to charity and a huge bin bag full of stuff to give to charity. But I still feel like I can get rid of more – I need to get everything together again and start comparing things to each other, to see what really makes me happy (whether it is for functional reasons or because I just love it) and stream line my collection even more.

It isn’t going to be a quick process but I can honestly say that, for the first time, I want to streamline my material possessions and keep it that way. Creating a less cluttered, more relaxing environment.

i have to say, though, this would never have been able to happen without the introduction of the prescription drug, Modafinil (Provigil is the brand name). Since having MS my fatigue has been such a huge battle. I have only had enough energy to do essential stuff (often not even that) and now this drug has boosted my energy enough to be able to consider getting other stuff done.

Before anyone thinks ‘there are other, natural, to things you can do to help your energy levels without prescription drugs’, I already do those things. I don’t eat refined sugar, I don’t eat gluten or much in the way of processed food. I eat regular healthy meals. I do yoga (when my body allows) and cycle (ditto) – and they have made a huge difference – but I was still unable to function to the level I needed. All I can say is that I understand people don’t want to have to take lots of drugs but some people really do need to. If you can find natural solutions that work for all 7 of my medications then I am all ears!! 😀👍🏻

Oh if you are interested – the film ‘Limitless’ is thought to be based on Modafinil. 

So, the decluttering will continue (energy and time permitting) and I’m hoping it will continue to give me the buzz! 

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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 🙂 

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?

Update on Copaxone (3 a week)

Drugs and medication, Uncategorized

After I had my last jab of the week on Friday it did swell up and bruise a fair bit – but I tend to find they always react more on my thighs for some reason. 

By the next morning the bruising and redness had gone down and only a sore lump remained. It stayed there for about 24 hours and then pretty much disappeared. So that’s nothing too bad. 

I did find I was extremely tired and sleepy when I woke up the next morning. I ended up going back to sleep for 3 hours as I couldn’t keep my eyes open. I’m hopeful that this is just a symptom caused by my body getting used to the new dosage and that it will even out eventually. 

It was so nice not having to think about injecting over the weekend! I felt pretty good too. So here’s hoping it continues to be a good change for me. 

Have you made the change from daily to 3 a week copaxone? How are you finding your medication? Please let me know in the comments below 🙂 

Thanks for reading!  

 

Copaxone

Drugs and medication, Uncategorized

I wanted to write this post as when I was doing my research on the 3 a week copaxone I couldn’t find very many ‘real people’ talking about the experience of changing from the daily one. I’m going to try and document as much as I can about my experience of it and hope that someone, somewhere finds this and it helps them to make their decision. I know it can be a bit scary messing with your meds and posts like this would have really helped me take the plunge. 

Since I was diagnosed last year I have been taking daily, self administered injections of Copaxone. I began by taking all of my drugs in the morning and, to be honest, it felt like a lot for my body to cope with in the morning so I switched to doing it at night in bed. This has definitely worked better for me. It means I can rest with the pain of the injection rather than needing to run around and get ready for the day.

People always say ‘I couldn’t do it’ or ‘I don’t know how you do it’ – but if it was the difference between being bed bound or not, then I believe you will learn to do most things – including stabbing yourself with a needle. I took to it pretty well, to be honest. The fattier parts of my body are almost painless to inject into – so I have found a new love for my muffin tops and belly! However my loss of appetite (that’s another post entirely) and my need to stick to a very healthy diet is shrinking those parts – I’ll let you know if that changes things!

So far (after 4 months) I feel like it has had a positive effect and hasn’t caused too many side effects. To begin with I used to get painful raised lumps that stayed there for days, but my body seems to have found away of minimising these skin reactions to the odd sore lump or a bruise.

Recently, my MS nurse told me that a 3 per week version had been developed and we agreed I would move over to this ASAP and see if it worked better for me. The prospect of only having to inject 3 times a week was an exciting one! Weekends with no jabs! (These are the kinds of things that excite me these days 🙂 )

So, they arrived on Wednesday and  I was advised to start it straight away and dispose of the surplus daily syringes with my drug delivery company. I have to say that it was a little bit more painful and stingy – but nothing particularly very bad – and the soreness has stuck around a bit longer but it really is only minor and isn’t causing me any problems.

THEN last night (Thursday) I didn’t have to inject before bed, and I know it sounds like such a minor thing but it just felt so great to be able to take my other pills and just get straight into bed – no faffing about with a needle!

Because my partner is one of the most supportive people on the planet and likes to make a fuss of any achievement we have, however small, we are going out to my favourite healthy restaurant tonight to celebrate this change of regime! It really does effect both of us as he always stays up with me so we can count the 10 seconds before I am allowed to take the needle out – it’s sort of become one of those couple traditions that occur over time in a relationship. The restaurant is called Tierra Kitchen and it’s in Lyme Regis, Dorset.

Thanks for reading and please feel free to subscribe, follow, share with anyone you think may find it useful and feel free to leave me comments or share your own experiences.

Until next time! 🙂

Things people say when you have a chronic ilness…

chronic ilness, Uncategorized

So, I have seen quite a lot of blogs out there with a similar title to this one. And I’m pretty sure it is because one of the most difficult things we experience is the reaction of others to our individual symptoms and diagnosis.

I would like to start the post by saying that this is by no means me saying that people are awful and terrible and should be disciplined for their actions! Their comments and behaviours nearly always come from a place of finding it uncomfortable to be around you and your ilness and just generally having no clue how to handle it. I mean, if we ddon’t know how to cope with it half the time – how can we expect others to? So although this is a bit of an ‘offfloading’ or ‘whinge’ it comes from a place of love and understanding that people are generally doing the best that they can. Usually. 🙂

“Are you better now?”

No, it is called ‘chronic’ for a reason. I may geet lucky and be someone that manages to get rid of most of the worst symptoms, but in general this is something I will always have to consider. A relapse could be lurking around any unsuspecting corner….so yes I will be living my life to the fullest I can and staying positive so I can battle if it comes.

“My friend cured herself with…Why don’t you try…”

We don’t want to hear that people. If we are looking for weird and wonderful cures we will be sure to ask people, but until that point we probably aren’t ready to face the disappointment of dashed hopes when they eventually don’t work and we are back on the hard drugs. Like I say – it’s coming from a good place but it’s so often really unhelpful.

“Janet from Zumba class has MS and you would never even know – if she can do it you can!”

Never compare one persons ilness with another. You have no idea how demoralising this is. For a start MS is called the snowflake disease for a reason – no two people experience it in the same way and you judging us on our ability to cope with our ilness makes is feel like a pile of shit – seriously. We know you are trying to be positive and whatever but this is absolutely one of the least helpful things you can do. Please do comment if this has happened to you and how you have dealt with it! (Without punching people in the face)

“Just be positive! Don’t let it get you down! Fight it!”

I’ll tie bricks to your limbs, drug you, give you stabbing pains all over, a temperature, nerve twitches and nausea so bad you can’t eat and you can come back and do this at least 3 days of every week and we will see how positive you can be yes? We are trying to be positive but you saying that doesn’t make it any easier. In fact it makes us want to swear at you. Don’t you think we would much rather be in a positive mood if we could? Nobody chooses to feel down!

“But you’re always ill, you never make the effort to come out anymore”

Oh I do apologise – I’ll just turn it off for today then. *presses off switch* Aaaah much better. So what are we doing?

“At least it’s not cancer…”

Yes I am very grateful of that fact. But actually the symptoms aren’t dissimilar but that isn’t even the point. If you were in hospital with a broken leg, I wouldn’t come and visit you and say “Well at least it wasn’t a heart attack”. It’s so irrelevant and shows that you aren’t taking the person or their ilness seriously at all.

These are the main ones that I have experienced so far in my short time in this world – I would love to hear if anyone else has experienced these or any others. This isn’t just about physical ilness – to be honest I think mental ilness gets an even worse deal.

Thanks for reading my little rant – hope you found it either entertaining or helpful.

If you know someone who does suffer with their mental or physical health please do be mindful of the stuff you are saying and remember that you haven’t experienced what they are going through so perhaps just listening, understanding and giving them the support they need is better than giving poorly thought through advice that may make them want to make a voodoo doll of you and stick pins in it’s eyes.

Until next time! 🙂