I’m back!

I’m back!

Well it’s been a hot minute since I posted on here, most of you know I recently finished my degree, so uni work really took over my life for a few months. But I’m back and excited to get back into writing as I’ve got lots of ideas for ME/CFS related posts and some random ideas too!

I have an exciting summer planned, ignoring job searching, with a lot of changes happening. To be quite honest, I just really want to have a relaxed easy summer. The past four years have felt like my life was going a million miles an hour, so much has happened and I’d like some time to digest everything. I’m in a lucky position where I can afford to take my summer off and enjoy my last break before starting work!

See you next time pals x

The positive side of invisible illness

The positive side of invisible illness

Now this may seem a strange title, however I promise I am going somewhere with this. It’s so easy when you have any type of long term health condition to get bogged down in the negatives of it. Which lets be honest, there are MANY, I am not going to lie having any kind of illness absolutely sucks. There’s no doubt in my mind that life would be a hell of a lot easier if I didn’t have CFS/ME, but I really do believe every cloud has a silver lining, this is just a big ol’ cumulonimbus and the lining is more of a thread. Nevertheless, I spend so much time talking about how important it is to stay positive, and I am generally a very positive person, so I thought I should write about some of the positive things to come out of this illness.

My Relationship is unbelievably strong. Granted, Cal and I have always had a great relationship, but we’ve also had a lot of tests to pass. We spent the first two years long distance and now we live together, it’s hard to ignore the pressure having a disability puts on both of us. Credit where credit is due, it can’t be easy being with someone with an illness, yet Cal never seems bothered by it (or he’s just VERY good at hiding it). I’m not exaggerating when I say if it wasn’t for Cal I wouldn’t be finishing my degree, I am so fortunate he chose to move to Brighton when he did because otherwise I would have had to move back home, I simply couldn’t look after myself without some form of care. On a bad day, Cal is my carer, whether it is bringing me food when I’m bed bound or helping me get changed, I have to depend on him. I spent a long time worrying that this would have a negative affect on us, it certainly isn’t easy but it’s all about balance, so when I am well we make up for it.

I’ve learnt the art of prioritisation. It goes without saying that it’s important to be organised with your time, but this really comes into play when you have an illness like this. I have to prioritise and be realistic with how much I can handle, now don’t get me wrong this is something I’m still awful at but it’s all about baby steps, prioritisation is probably one of the most useful skills to learn and now I have to master it.

I’m a bit nicer to myself . Strong emphasis on ‘a bit’ here as I have much more work to do on this, I’m a long way off where I’d like to be but it’s all about building a foundation. Now as someone who’s battled with depression since I was 16 ~ if not younger ~ I’m terrible for beating myself up over little things and putting a front up to everyone. Since falling ill I’ve had to stop being so hard on myself because I’m already tired enough and facing a constant battle in my head isn’t going to help.

If there’s one thing I’d like you to take away from this post, it’s that no matter how horrid a situation is, there will be something good to come out of it. I’ve said it before but 2018 really was the worst year of my life, I faced battles I never thought I would, but I know I’ve come out a much more resilient person for it. If I can do it, so can you.

See you next time pals x

A lil CFS/ME update

A lil CFS/ME update

It’s been 7 months since I started this blog so I thought I’d do a little update on my CFS/ME, it’s been quite a hectic 7 months to say the least, but I actually feel I’ve made quite a lot of headway with managing CFS/ME.

The main thing I’ve been able to adjust is my routine, 6 months ago I would struggle to get through the day without taking a 2 hour nap, obviously that was extremely inconvenient. Days where I wasn’t able to have a nap would usually result in a day or two in bed, I was so fed up of being so restricted. It took a while but I’ve managed to cut out napping, I still have extreme days where I’m pretty much bed bound which just comes with the territory. Cutting out those naps has honestly made such a difference, I’m not going to lie it takes a lot of organising of my days and judging how taxing an activity will be, but it’s made it so much easier to actually do things. Just to tackle uni work I made a whole timetable for a month and it has definitely made me a lot more productive.

I think it’s made such a big difference living with Cal, don’t get me wrong I loved my years living in a student house and I really miss seeing everyone every day, but there’s no way I’d have been able to manage my illness being that independent. Since living with Cal simple tasks have got a lot easier, Cal can help me with cleaning, cooking and anything really. I know none of my housemates would have minded if I had asked for help, but it’s an issue of pride, no one wants to admit they can’t do simple daily jobs, whereas living with Cal a lot of the time I don’t even have to ask him.

That’s something that really hasn’t got easier, although I know I need to ask people to help me with things but I still find it hard and struggle not to get embarrassed. There’s been several occasions where I know it would have been a lot easier if I had just said I have a disability, for instance Cal and I were at a gig which we’d had planned for months but it was the day we came back from Berlin and I was SO fatigued. We ended up having to leave early as I was in so much pain from standing and I felt horrendously guilty for cal and upset we’d had to miss the end. Annoyingly, there were a couple sat on stools at the edge of the venue and a lot of the time they would stand up to watch, and if I had just had the confidence to say I needed to sit down then I probably could have made it through the rest of the gig.

I’ve really tried not to dwell on instances like that but it’s hard not to get frustrated with yourself. In terms of where I am with my illness, I feel I’ve come a long way physically, sadly I get a lot more joint pain than before, however I can see such an improvement from where I was 6 months ago. I know I still have a lot of work to accept and manage this illness emotionally, but I can see everything I have managed to overcome since being diagnosed and that’s what keeps me motivated to keep trying.

See you next time pals x

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