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 🙂

 

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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! 🙂

The Breakfast Debate

Uncategorized

I have battled with breakfast over the years. It always seems to be the meal that gets eliminated as soon as someone is trying to save time or calories. During the time I suffered with an eating disorder, and had an obsessive relationship with food, I also found that this was the easiest meal to cut from my day. This could have been because I was too tired to be hungry enough to care about food at that time of the morning or it could have been due to the fact that I would always wake up late (and ofcourse my make-up and hair was far more important).

I have since realised that when people say that breakfast is the ‘most important meal of the day’ there is an element of truth to that. I think all meals (and snacks) are important and breakfast does seem to set the scene for your consumption for the rest of the day. So, to me, it isn’t just about the HAVING of the breakfast, it’s about what you actually put on your plate (in your bowl, smoothie glass, jug, hand etc.) and how much you enjoy it.

I first made the move to eating breakfast by having a bowl of whatever fruit I had in the house with a big dollop of full fat Greek yoghurt. I can hand on heart say that it was the beginning of the big changes I was about to make. I found that I woke up in the morning excited to get into my big bowl of fresh fruit goodness. I know it sounds a bit sad (like I don’t have a life) but actually there were some nights I went to bed actually looking forward to getting up and stuffing my face with it. And I do have a life – mostly thanks to that first little change I made to my diet.

I have now made the move over to breakfast smoothies. I know people think it sounds very pretentious and there is so much stigma attached to the ‘green smoothie yah? Yah, it really fuels me for my workout’ (said in my best Made in Chelsea accent) lifestyle. But I just find it is loads easier to get more goodness in there – it is as simple as that. After I have guzzled a frozen banana smoothie down, with added ingredients, I feel full and more awake to start my day (after I have recovered from the brain freeze).

Yesterday's smoothie & pint of wheatgrass & water

Yesterday’s smoothie & pint of wheatgrass & water

So I challenge you to just take one step and see how you feel after waking up and having a bowl of fruit every day for a week. You are already getting a couple portions of your 5 a day and it should make you make better food choices for the rest of the day. Please do let me know if you do give it a try – I’d love to know how you got on J

Here is a Deliciously Ella smoothie recipe that got me started with them. Recipes like this taste like they are really naughty so are a good way to get into the routine of it before you start adding stuff that makes it look green and sludgy (but still tastes great).

http://deliciouslyella.com/cacao-banana-avocado-smoothie/

The smoothie I had this morning was –

2 frozen ripe bananas, half of a ripe avocado, tbsp. almond butter, dessert spoon of ground walnuts & almonds with Q10 enzyme, dessert spoon of wheatgrass powder, cup of almond milk (adjust the amount according to how runny or thick you want it), tsp. cinnamon, 5 small soft dates.

It tasted amazing and I had it at 8.30am and I am still mega full at 11.15am. So no craving for sugary biscuits with my tea! *thumbs up*

Please do let me know if there is anything you would like me to write about in the comments below 🙂

Will give an update on all things multiple sclerosis related soon.

Chronic ilness, the mind & the self

Uncategorized

So, it seems pretty obvious that chronic illness will affect your mental health right? Yes, but the impact it can have on your mental health, I have found to be more varied than I had ever considered. For example – you have the worry of diagnoses, the tests, the waiting in hospitals, missing work, having to actually speak to Doctors and specialists and then relaying this information to the people in your life. This is all a no brainer. As is the actual stress of the physical illness – the aches, pains, sleep disturbance, anything that’s seeping out of anywhere it shouldn’t be at a time when it shouldn’t be and the unrelenting fatigue etc. But there is definitely more to it than that. Another thing that has challenged me is how it makes you question who you are and what your role is in life. Before being ill I was very sociable and outgoing – always up for a party or event of some kind. I was also a person that worked hard and was efficient – efficiency was one of my things. Since I’ve become a ‘grown up’ it has become a way that I measure my value, how much work I can churn out at a high standard. And then along came bowel disease followed by possible MS in the space of 12 months and it has made things a little trickier. Yes, I still work hard – but not to the standard I would like and I have less energy for a social life. But I have only begun to accept this in the last couple of weeks – 14 months since I started getting ill. And by acceptance I don’t mean be OK with it. This is one aspect of chronic illness that I don’t see people write about enough. The challenge of adapting to a new self.

Another thing is how you talk to people about it and how you manage their response. People don’t often ask me how I am or how the tests are going in social situations because they don’t seem to want to bring down the mood and talk about how crap it is to be ill all the time. That’s fair enough. People seem to be very uncomfortable with talking about stuff like this, I’ve found they generally have no idea what to say. They can’t say ‘hope you get better soon’ or ‘insert positive message here’ because you won’t get better soon and if you do it’s likely you will go back into being ill again – at some point. So I find that people don’t tend to ask me much at all – and this has obvious consequences. First comes the bitter ‘nobody asked me how I am’ thought then the guilty ‘oh but they don’t know what to say to me so it’s not their fault’ or ‘nobody wants to be bored by me talking about illness all the time’ – half the time I think they are just scared I’m going to cry.

So I guess what I’m trying to say in this blog is that chronic illness is a funny old business that doesn’t just attack your mental health from one angle. So if you do find you are unfortunate enough to end up in that position please prepare yourself for that. My advice would be –

Do your research – read about it, speak to people who have it, don’t sit at home alone worrying about stuff get out there and talk to people that know what you are going through. Laugh about the dark comedy that surrounds living with these conditions.

Try not to get frustrated – people won’t behave how you want them to. Humans react to situations in a myriad of ways and you can’t expect everyone to be exactly as you need them to be all the time.

People who think they know more about your illness than you do – this WILL happen and it will only sap away your energy to get stressed out.

Practice mindfulness – It is incredibly helpful and there are so many ways to do it that there will be something for everyone. It will help you to stop worrying about the future and ruminating on the past and just to be present in the moment and get in touch with your body (which I know can be difficult when our bodies seem to have failed us).

Take time to relax – I am terrible for this but I am starting to learn that I need time out just to lay down and recharge or my fatigue gets way out of control. It may mean cutting back on social things or strenuous hobbies for a while but may mean that you get back to being able to do them quicker.

Feeling sad is perfectly normal – grieving for a life, role in life or whatever that you used to have and that will now be very different is ok. In fact EVERYTHING YOU ARE FEELING IS VALID and it’s all OK.

Lean on those people that want to support you – I have struggled with feelings of guilt putting so much onto my boyfriend. Allowing him to look after me and do things for me is very difficult for me as I have always been independent and done things for myself. The reason that people live in families, friendship groups etc. is because we need others to survive and be happy. One of the things in Maslow’s hierarchy of needs is to feel loved – allow whoever is in your life to show that love through how they support you. If they really do care about you it will make them happy to be there for you.

Now I’m no expert of course. But I have been both mentally ill and more recently physically ill for most of my life and the things above have taken a long time for me to accept – but here they are and I hope they help you in some way.

Oh and lastly, if someone offers you a CURE ALL supplement or diet then they are severely misguided and talking rubbish. No one thing is a cure all for everyone.

No, not even Aloe Vera. 🙂

The Plan

Uncategorized

Hello to anyone reading. My name is Kerry, welcome to my blog. 🙂

I have been wanting to start a blog for ages, but I never seem to have quite got there. I have a few videos on YouTube, I was getting quite a few views and then illness struck and fun stuff like that got put on hold.

The moment where inspiration struck me, and I delved into the bloggersphere, was food based. I find so many of my epiphanies have been! But, let me rewind to last year.

So, I was diagnosed with Ulcerative Colitis in October 2014, after over 6 months of various symptoms that I will go into in a later blog. I started medication for that and got progressively more tired and less inspired by food – in fact I loathed and feared it (our relationship has always been very love/hate – leaning more to the negative) so I stopped caring about what was going into my body and more about the effect it would have on my bowels.

Then, a year after my UC symptoms had started, I started getting lots of pain and fatigue, followed by many tests and a diagnosis of MS (Multiple Sclerosis) just over a month ago. I had got to the point where I had no energy to even cook for myself. I couldn’t wake up in the morning and when I did I felt like I hadn’t slept. Then, 1 week ago today, I decided to take matters into my own hands and completely change my diet. I had been on a primal diet in the past and knew it was too extreme to be sustainable for me. But, I knew that when I had eliminated processed food and starchy, high carb foods from my diet, in the past, I felt much better.

I then spoke to a very close friend of mine and she said that some of her family have controlled their MS through a gluten free diet. Anything was better than continuing to feel so exhausted and lacking in life.

After 24 hours of clean eating I felt energetic enough to cook myself (something I hadn’t been able to do for months) some recipes from the Deliciously Ella cookbook – suddenly food is exciting and inspiring again and I even have the energy to cook it – what voodoo magic is this?? 7 days later and I can’t believe I haven’t been doing this clean eating thing for my whole entire life.

My idea was that if I start a blog about feeding your body and mind I can keep myself on track, while sharing recipes and other awesome stuff with other people that might be interested. Whether it works or not remains to be seen.

If you have any words of wisdom or even just WOOHOOs of encouragement please do comment below. Have any of you had the same experience? I’m all ears! Would any of you like to know more about anything in particular? Assuming someone actually reads this of course!

Anyway, thanks for reading this brief little summary. I am sure I will go into lots more detail in subsequent blogs, but this is a fairly good place to start right? 🙂

Much love x