Travelling with CFS/ME

Travelling with CFS/ME

I recently went on a (very fun) trip to Berlin with Callum and a couple of our closest friends, sadly at the moment I’m going through quite a dip in my health with CFS/ME, so going on this trip was quite nerve wracking as I had no idea how I would be whilst we were away. I’m so fortunate that our friends were so understanding but I also decided to use special assistance at the airports. This honestly made such a huge difference to the whole process of travelling, both our flights were early in the morning and the lack of sleep really takes a toll on my fatigue, so knowing I had help going through the airport.

Anyone who is perfectly healthy is aware of how much walking is involved with airports, but for someone suffering with a disability it’s a really overwhelming thought having to navigate through a busy place on a time constraint. It made my day so much easier having help getting to the gate and plane as I knew I would get there in time and I didn’t have to use all my energy getting there. Anyone with a disability and concerned about airports, I strongly advise you use special assistance even if there’s a chance you will be well on the day, there’s security knowing you can use it if you need it.

I think the biggest tip I have is planning your day out to what you can realistically handle (I know for a fact Cal, Izzy and Ali are laughing reading this), however I find it’s better to plan less for a day and feel you can handle doing more than planning lots and realising you won’t handle it all or making yourself ill. One of the biggest troubles I have with travel is feeling like I’m missing out or causing others to miss out, I looked back at our big family holiday to Cyprus and realised I’m only really in pictures from the evenings as I was merely too poorly to go out and do things. The only day out I had was a trip to a water park (also the trip out we did in Berlin was to a water park, everyone HAS to go to Tropical Islands if you go to Berlin), and it really upset me at the time that I missed out on so much. Now I look back on that holiday and think of all the things I managed to do rather than what I didn’t manage, I read 8 books in the two weeks we were away, I managed to swim everyday and play cards with the family. Just changing this mind set really makes a trip seem so much more positive and it’s what makes me still feel capable of travelling.

I’d be lying if I never felt like I was holding others back from a good time, but I just have to remind myself that if roles were reversed I would only want them to be happy and enjoying themselves. It has taken such a huge toll on my confidence having to constantly judge what I can and can’t manage, particularly when I go through a dip in health, however I know it won’t always be this bad and when it is I just have to be kind to myself.

It’s not always easy accepting you need the help, however as soon as you do, travelling becomes so much more achievable and enjoyable.

See you next time pals x

It’s okay to be overwhelmed

It’s okay to be overwhelmed

I think everybody looking for work or thinking of changing job feels anxiety around it, I think the current uncertainty around Brexit is definitely heightening that at the moment. I’m certainly feeling it as I come towards the end of my degree, everyday someone asks me what my plans are and honestly I’m no clearer than when I started university. I’ve been telling myself to keep open to do anything when I finish, to be honest most of the time I take a ‘what will be will be’ stance. However since falling ill with CFS/ME, it’s like I’ve watched each door open to me slam shut as I would struggle to do those jobs.

It’s been really strange going from being so career driven and spending my whole life working towards a career, and all of sudden the idea of a career feels so far fetched to me. Realistically I’ll be able to work part-time, or full-time but with a couple of days at home, it’s really dawning on me that I won’t have the career I’d always imagined myself in. It’s really difficult to not feel inferior to everyone, and in no horrid way, I see my friends with these great careers ahead of them and they have so many options open to them, and I am so envious of all the amazing things they’ll get to do.

It might not make sense to others, but i’m finding it really hard to understand why an employer would want to hire me when they could hire someone who was fully able, then I get this crippling sense of having to prove myself and guilt because I have no energy to do anything about it, and it’s simply a vicious circle I find myself caught up in. I’m sure that’s absolutely normal for anyone suffering with an illness, and in the rational side of my brain knows that I can’t be discriminated against, but still there isn’t a day that goes by where I don’t worry about my job prospects.

All of this realistically feels very far away and I still have to finish university, but it’s coming round a lot quicker than I like and it’s the one thing everybody wants to know about. I’ve always planned to take a break after university, and I know I won’t be able to walk straight into a job as I’ll need some recovery time, but I still feel overwhelmed at what’s inevitably around the corner.

See you next time pals x

2018: The year that changed my life

2018: The year that changed my life

It seems strange to be posting about 2018 when we’re already mid-way through January, but I felt I couldn’t return to writing without wrapping up my year in some way. 2018 without a doubt has been the hardest year of my life, aside from battling CFS/ME, I lost three grandparents within 9 months. Don’t get me wrong the year was not only bad times, I made some incredible memories, however I know I won’t remember this year in a positive light. If you had told me this time last year the position I would be in now, I’d have struggled to believe you. As strong and positive as I’ve felt throughout the year, it’s impossible to ignore the impact losing my grandmas and granddad has had on me. I am extremely fortunate as I grew up with all four grandparents living only 15 minutes away from me, aside from when I am away at University, I saw them on atleast a weekly basis. I am so grateful for all the time I had with them, however it has made losing them such an adjustment to my life as I feel the gap they’ve left.

At the end of March I lost my Grandma Fox which completely turned my world upside down, we had always been so close as a family, but all of a sudden our daily life changed as we went from seeing her nearly every day to not at all. Although nothing can really prepare you for loss, we were somewhat prepared, we were aware Grandma had a terminal illness so really got to cherish our last months with her. I still find it hard walking into Lincoln Hospital knowing she has gone after going so much to visit her. The saving grace throughout this loss was my Grandpa Fox, we became so close to him over the summer, especially Cal and I, he was so strong and positive but also not afraid to express his sadness. I think his attitude really kept us all going as he led the way in carrying on.

Only 7 months later my Grandma Siva passed away, it felt like being thrown back to the start of the process as I’d barely begun to come to terms with losing Grandma Fox. The only comfort in losing Grandma Siva was knowing she was no longer in pain and suffering after months of battling cancer. Again, although we weren’t unaware of how ill Grandma was, I still felt as though I had been robbed of time. This made it quite hard to accept and I felt such a conflict of emotions from guilt to anger to just utter sadness, I know now this is allnormal but at the time it felt like I was losing control of my emotions. Going through grief is a really strange time as you wish the you could stop everything and just allow yourself some time to recover and be sad, but the world carries on around you and you just have to learn to adapt.

That feeling really came into play over Christmas as my Grandpa Fox passed away extremely suddenly a week before Christmas. I don’t think I will ever forget my phone call with my mum when she told me as I was just plunged into a state of disbelief, even though it’s been a month there’s still a part of me now that doesn’t want to believe he’s really gone. The last time I saw my Grandfather, my mother and I left his house saying how healthy he looked, he looked content despite everything that had happened over the past year, three days later he died instantly from a sudden heart attack. I’m still incredibly devastated at the loss of him, I still have moments of feeling angry that he’s been taken from us, however he didn’t suffer or even know what was happening which is what he’d said he wanted. The night before my father actually had an extremely vivid dream that there was a couple in our house and he watched them walking out the door, we know one of the last things my Grandpa did was buy and write a card for my parents thanking for them for all their support throughout losing my Grandma Fox. I can’t help but think my Grandma came for him, maybe that’s what my father saw, I don’t know what my beliefs around death are, but for now I’m finding comfort knowing they’re together.

I feel such a huge hole in my life at the minute without them all, however I know in time that will heal and it’s a credit to their characters. My Grandpa Fox used to say to us that everyone keeps telling him it’s going to get better but it isn’t, as heart-breaking as this was, my mum and I would say ‘It probably won’t get better, but it will get normal’. This feels realistic to me, at this point it’s hard to imagine feeling better about all this loss, but I know in time it will just become a part of life. It’s been so hard watching my family, especially my parents, keep going through this pain knowing there’s nothing I can do to take it away. You wish you could just wrap everybody in bubble wrap and protect them from anymore hurt. On the other hand, I got to enjoy 21 years of love and memories with my grandparents, which a lot of people don’t get to experience. So here’s to 2019 not necessarily getting better, but getting normal.

See you next time pals x

Managing a setback

Managing a setback

On my CFS/ME course they use the term setbacks to talk about anything that creates struggles for us when managing our illness. To a certain extent, the past month’s events have been a huge setback in my illness, I have become significantly more poorly, but it has been really hard judging when to let myself feel sad and grieve, or when it is impacting my illness and making me feel worse. 

In my previous post I spoke about positivity and how important it is to remain optimistic with this illness, it serves no value to feel sorry for myself. What I’m really struggling with at the moment is remembering that in the past year I’ve lost two people very close to me, anyone without an illness would be struggling to and I have to be kind to myself because I have to manage an illness and manage bereavement. 

My plan for the next few weeks is to put myself first as much as possible and put my illness back at the top of my priorities. It’s okay to be a bit selfish in these circumstances. If someone I knew was in my position, I’d be telling them to put themselves first, so I should take my own advice. 

See you next time pals x

A little positivity

A little positivity

It’s been a hot minute since I wrote a blog post as I sadly lost my Grandma at the end of October, so needed some time to process and recoup. I don’t want this to seem selfish but obviously this has taken a huge toll on my fatigue, it doesn’t take a medical professional to connect stress to illnesses, I have seen a huge decline in my health the past few weeks. On the other hand, I think it’s important to remember that there is a reason for that, I’d come so far with managing my fatigue and was actually going through a very healthy patch, there’s no reason I can’t go back to that.

One of the biggest things I’ve learnt with CFS/ME is how vital your mindset is, now I’m not saying I never have days where I don’t feel down about being ill, I just know how important it is to keep positive. I count myself lucky that I am able to keep motivated to get as well as I can, it would be so easy to just settle and believe that I’m always going to be this ill. It took me a long time to get to this place, a huge part of it was accepting that I am chronically ill.

I pride myself in being optimistic, particularly as someone who has suffered with depression for years, it’s never prevented me from being hopeful for better. I will put my hands up and say I am guilty of getting easily frustrated when people are pessimistic, I’ve just never seen a need for it. I understand being realistic however there’s a difference between the two, it must be so draining to constantly think negatively. Maybe it’s because I have spent years teaching myself to separate the negative thoughts that come with depression, so therefore don’t understand why someone would voluntarily always take the cynical side of things.

I hope this post will help some people that find themselves stuck in negative thoughts, even I find it draining when someone is constantly moaning so goodness knows how they feel. It’s okay to be sad and to moan but you have to be able to pick yourself up and focus on what is really going to help you. A little positivity can go a long way.

See you next time pals x

What I wish people knew about CFS/ME

What I wish people knew about CFS/ME

I wouldn’t wish this illness on my worst enemy, but sometimes I wish people understood what it was like to suffer with CFS/ME. I thought I would talk about some of the things I’d like people to know.

It’s not a choice

I know it may sound obvious, but I think it’s easy for people to just think I’m being lazy or emotional when actually whatever is happening in my body is for more complicated. Believe me, if I had the choice between spending all day lying down or being able to get through the day without stopping to rest, I know what I’d pick. Even when it’s a joke it still stings if someone calls me lazy, it’s not like I have an option.

The FOMO is gutting

It’s a cliche but honestly the fear of missing out can be a horrible part of this illness. There’s nothing worse than watching your friends be able to do whatever they want whilst you’re so restricted by an unpredictable illness.

I don’t want sympathy

I understand this illness is pretty rubbish, there’s no sugar coating it, there’s nothing fun about being chronically ill. However I’ve never needed people to feel sorry for me, all I would ask is for their support.

Ask me questions

When I first suffered from CFS/ME there was a lot I didn’t understand about the illness, it’s obvious that people who have never heard of it are going to struggle to wrap their heads around it. The best thing is to just ask me any questions you have, or go search online, the better you understand the easier it will be to help.

This is a serious illness

Although it’s not always obvious, this illness has literally changed my life. In the past year I’ve had to completely change my career plan, the way I live, my diet, my social life and keep a positive mindset. It’s not just feeling tired, my body has so many symptoms that I’m still discovering today – a fun new one that has emerged – my jaw clicks and locks like there’s no tomorrow when I’m tired.

I’m very good at hiding my fatigue

It’s a talent I’ve accidentally mastered, I think it’s an automatic response to just put a guard up, pretending I am feeling okay rather than admitted how ill I actually do feel. Don’t get me wrong, there are times I can’t hide the fatigue, however majority of the time I’m feeling a lot worse than I’m showing.

See you next time pals x

How my relationships have changed

How my relationships have changed

I decided to take a little break whilst I settled back into university and in all honesty I’ve been fairly unwell the past couple of weeks. It’s easy to remember how these dips in health affect me in the short term but they really knock me back emotionally for while, I find I’m very sensitive for the next week or so as I’m recovering. I made a very painful mistake in overdoing it on the 26th as I had my group session and university enrolment all in one day which meant I was out of the house from 9:30-5 without any breaks or food, and it’s taken a full week to feel better from it.

I thought I would write a post about how my relationships with people have changed since falling ill as I’ve had a lot of time to think about it recently. Now I am very fortunate majority of people around me are unbelievably supportive, even those who didn’t necessarily understand at first have taken the time to learn about it and try to be as helpful as they can. As with everything, there are a few who blatantly don’t get what it’s like to be chronically ill especially if they only see me at my peaks, which I understand. These tend to be the people that make things a competition, as though life is always harder for them, I find it’s easier to humour them and let them win the battle as it isn’t worth the energy.

I think the biggest change I’ve had to adapt to, is how dependent on everyone I am around me, I’ve always been very independent in looking after myself but with CFS/ME I have to depend on others. I have to ask people to help me with things and trust that they’ll be patient with me. As I’ve mentioned before, my boyfriend and I have I just moved in together, which is a blessing as I truly doubt I’d have been able to look after myself in a student house for another year. Don’t get my wrong, my housemates last year were angels and never failed to cheer me up when I was having a bad day but you don’t want to depend on them to wash your dishes or clothes for you. When I’m poorly Callum is effectively my carer, he will help me do everything whether it’s just fetching me things or helping me get dressed. I’m so fortunate to have someone who can look after me like that.

I’ve really learnt a lot about trust during the past two years, I had to judge who I could trust to understand my illness, especially how unpredictable it is. I’ve been very fortunate throughout my life to have had a handful of friends that I’ve grown up with that I knew I could depend on no matter what, but at university friendships are newer and being so far away from my family in Lincoln it was so important to me to know I have support in Brighton. I am lucky that at my university I have a big group of friends, majority of my course are all friends but even outside of that there are several people I know I could turn to in a time of need. I’m lucky to have formed a sort of dysfunctional family around me that understand when I can’t make social events or have to leave early.

I think it’s so important to surround yourself with positive people at the best of times, but the past year has really showed me how vital it is to have a strong support system around me.

See you next time pals x