2019: goals, plans + dreams

Afternoon my friendly readers! I hope you’re all keeping okay.

As time marches on, it’s important to remind yourself of what you’ve got lined up for the coming year; and head towards anything you would like to do. For me, the main overall and ongoing goal is to keep my health stable, or possibly see it improve slightly. Besides this however, I’m hoping to:

  • Complete more free online courses
  • Battle some anxieties I am yet to beat
  • Keep up with my social life
  • Read more (currently nearly finished my SIXTH book of the year so far. My goal is around 70 for 2019)
  • Write more poetry
  • Give less f***s

And as for things I know are coming up this year or will be planned soon:

  • A wedding
  • Going to visit my dad in his new house
  • Short break with my boyfriend
  • My 26th birthday

So it’s not an extensive list at this point. But for little old me who’s been stuck in chronic illness limbo for over 8 years? I’m still getting used to actually making and having plans!

Don’t let the bastards get you down.

Kelsey x

Anxiety Victory: Episode One

Howdy howdy howdy!

I hope you’ve all had a good weekend. This is going to be a great post to write as it’s all POSITIVE. Yes I kid you not; it’s a fully positive, happy good news post.

I was invited on a girls night out for a friend’s birthday at the weekend. Obviously I said yes as it was a good friend and I knew I’d enjoy myself. I didn’t second guess my decision. I didn’t stress myself out over it. And I didn’t pull out at the last minute. This time a while ago I’d have simply said noooooo thank you. Or I’d have said yes and worried myself into such a horrible state that I’d end up cancelling. But that wasn’t even on my mind. I had some slight nerves beforehand as it’s such an alien world to me, but I think that’s normal, right? If it’s something you’ve not done before, it’s natural to feel a bit daunted.

We ventured to three different places in town; all of which were really busy, loud and full of a ton of mental stimuli. But I just focused on myself and my friends. I wasn’t thinking outside of my company as I knew that no one was taking any notice of me. And if they were, it’s because they’re checking me out πŸ˜‰ hahaha. I had numerous drinks and even chose to order shots for the four of us. I just…let loose. I also didn’t get into bed till 3am which is INSANE for me. Look at me being all young + adventurous. Okay so it’s still not something I’d do regularly, but to now know that 1) I can handle it 2) I enjoyed myself and 3) It’s not that scary? I feel so empowered.

TAKE THAT ANXIETY πŸ–•πŸ»πŸ–•πŸ»πŸ–•πŸ»

The Power of Friendship

Walking with a friend in the dark is better than walking alone in the light. Helen Keller

Afternoon you beautiful humans. I hope today is treating you well. The focus of this post is a genuinely super positive one, so three cheers for that! It’s all about friends and the true power of friendship.

Growing up I was never one to have a large group of friends. I’d usually have one or two BFFs and a couple of close buddies. I prefer it that way personally; quality over quantity. After getting ill in sixth form, it was difficult to not feel as if I’d simply been forgotten…a sort of ‘out of sight, out of mind’ scenario. It was a bit shitty but to be totally honest, it helps you weed out your true friends. Those who stick around through the rollercoaster that is life are those you always want in your corner. Fact. And what have I discovered since being so unwell? You can find lifelong friends in the most unexpected of places in the most undesirable circumstances.

As I was predominantly housebound for a long time, online forums became a lifeline and somewhat of a sanctuary for me. The first group I joined was called Foggy Friends; essentially a forum for those with M.E/CFS. There were so many lovely members and a variety of topics were discussed; anything from the serious to the downright silly. And as everyone was in the same or very similar boat, you immediately had common ground and a place to go for advice. Okay so I still couldn’t be online for any great length of time, but the small moments of communication were such a blessing in my daily life.

I then discovered AYME (Association of Young People with Myalgic Encephalopathy). This offered even more than Foggy Friends as all the members were peers or nearer my own age. Again we would talk about anything and everything. At this time, the private messaging part of AYME was still available, so a number of us exchanged links to other social media accounts such as Facebook. That then led to me finding even more friends through our new mutual ones. I got to hear so many people’s stories and experiences with chronic illness. It was so reassuring to know that I wasn’t alone.

As a number of us began to get closer, we decided to start writing each other letters; even sending gifts for birthdays, Christmas etc. It got to the stage where I’d be receiving at least one piece of pen pal post every single day. I treated myself to SO much stationery and absolutely loved it. The feeling of getting post was one thing, but to know that I, albeit in a small way, was brightening someone’s day, that was the main driving force. I could still make people smile, despite being miles away and confined to my home.

And the best thing about all this? My best friend Daisy. We began talking online right at the start of me being ill. We’ve both been through some serious crap with our health, but we’ve always had each others backs regardless of not being able to see each other for months at a time. Now we’re both doing a heck of a lot better, we can do stuff and hang out more, especially as we only live 20 minutes drive from each other; talk about a small world! We chat shit. We’re immature. We insult one another on a regular basis. But we can also talk about ANYTHING; mental and physical health, relationships, the future. Basically, if I hadn’t of gotten ill, I’d never have met my best friend for life.

I LOVE YOU DAISY ❀️❀️❀️

Oh and to give you an idea of our quirky friendship, here’s something she lovingly sent me the other day…

Keep smiling and hug your friends tightly.

Kelsey x

Things Not To Say To Someone With A Chronic Illness

Afternoon all! I hope you’re having a good Sunday. For this post, I sought the input of friends on one of my social media profiles. I asked if there were any particular things that they remember being told, asked etc with regards to their chronic illness(es). But I only wanted the bad, inappropriate, ignorant, hurtful and just plain silly remarks/stories. I want people out there to realise that, even though you think you’re helping someone, you can actually be damaging them mentally, or simply making yourself look ridiculous and ill-informed. My plan for this blog post is pretty straightforward; I’m going to take what my friends have told me, type it all up and hope that you’ll think the comments are just as bad as we all do. Note that this particular post will be about physical chronic health conditions. I’ll be doing a second post dealing with mental health at a later date. So, let’s get this rolling.

“I’ve been given lots of random advice! Told to exercise more, lose weight, eat healthier, get a part-time job etc etc” – Mark, M.E/CFS

“You’re just lazy. Have you tried not napping? You need to just push through and do normal activity and exercise. Aw, did you not sleep well last night? Why do you yawn so much, it’s really annoying. You were in bed for a week after the gym? It’s alright for some/you’re so lucky! I wish I could stay in bed” – Hannah, CFS

“You just need more sleep” – Alicia, Fibromyalgia and CFS

“My personal favourite comments from one person in particular…This is after being diagnosed with M.E/CFS for 16 years, a former manager asked if I was ‘allowed to work’ and if instead of a full-time career I should look into a part-time job, also that she was very ‘nervous’ that I have a medical condition as I’m a ‘time bomb’. She then continued that she had looked up and confirmed that apparently I was making half of my symptoms up because they weren’t on her Google search of most common symptoms. Another woman asked me how I’d be able to cope with being a mother as I’m always poorly and children are ‘hard work’. She said I wouldn’t possibly be able to have children as it’s unfair on them. I seem to believe she doesn’t think I have a partner or a supportive family who will provide any help necessary, if required” – Gemma, M.E/CFS

“I got told (when I was 17) to drink more and have more fun and I’d be alright” – Kayleigh, M.E/CFS

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“You cannot have M.E, you’re not fat. Ah that’s shit! My sister has it too – she ate healthy and is now better. You’ll be fine, just need to rest. You should try going gluten-free (I’ve been gluten free for five years anyway). M.E? Isn’t that M.S? Get better soon! 22 years? Gosh I would have probably killed myself by now. Drink more water. Well at least it’s not cancer. Is this all you want for your life?” – Alice, M.E

“God never gives us more than we can handle. (Almost always said by someone who has had a relatively simple life, who mistakenly thinks it will be comforting to hear that their God keeps throwing this shit at me deliberately)” – Katie L, M.E, Ulcerative Colitis, Endometriosis

“Have you heard of The Secret? You’re sick because of what you’re putting out into the universe” – Kassady, Ehlers Danlos Syndrome, Gastroparesis, Dysautonomia

“Aren’t you too young for all that? And you are awful young to be on Warfarin, aren’t you?” – Katie B, Venous Sinus Thrombosis, Inter-Cranial Hypertension, Joint Hypermobility, Fibromyalgia, CFS

“After I was signed off sick, I was told that I wasn’t allowed to join my company for their work Christmas do because I ‘didn’t look ill’. Not because having ill people wasn’t their policy, but because I didn’t look ill. Explaining how my illness worked to someone else, they asked if I was just overthinking it. My DWP disability advisor once said to me ‘I think you can do more than that. I know someone with M.E who does x, y and z. You’re so young, don’t you at least WANT to work?'” – Kim S, M.E/CFS

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“It’s because you drink Pepsi. I’m 82 and I can cook” – Sally, M.E/CFS, Fibromyalgia

“Migraines? I know how you feel. I get headaches too” – Raynor, Chronic Migraines

“Well you know how some people believe in M.E and others don’t? I’m one who doesn’t…(said to me by my own GP). Some people just can’t handle pain (said to me by a different GP). You just need to go out and get some fresh air. Once you lose weight, you’ll feel so much better” – Jess, M.E

“This life isn’t a dress rehearsal, you only get one of them. I don’t feel like you really want to get better” – Will, M.E, Fibromyalgia, IBS

“On frustration with multiple infections (not related) and inability to heal a normal earlobe piercing, my GP mocked me and said to the student GP sitting in ‘look at her cry. We manage without ear piercings’, thinking I was upset specifically about the piercings themselves. If he was more compassionate he would understand I was upset about my immune system. This was the last straw” – Elaine, M.E

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“I’ve had people ask me how I am but not given me enough time to actually reply. They then say that I’m ‘looking SO well'” Kim M, M.E

“You’re too young to take all those medications. You should consider stopping them. Sorry how do you spell that? (from consultants when I tell them what I have). You’re tired? But you haven’t done anything?! I’ve also had some silly suggestions of things that might help me: lying in a darkened room with my feet up, rubbing my stomach while eating and having a bit of a hum to improve digestion” – Sammie, Ehlers Danlos Syndrome, Chronic Migraines, Fibromyalgia, Fatigue, Endometriosis

“You should try to make it to your appointments” Anthony, M.E

“Well you look fine to me. Yeah I know how you feel, I only got five hours sleep last night (Five? Five in a row? Damn I would think I’d died and gone to heaven!). God there’s always something wrong with you isn’t there? But you went out yesterday, obviously you were fine then so why can’t you today?” – Lucy, Dysautonomia, CRPS, CFS

“Oh M.E? Is that the one where you die?” Georgina, M.E

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“You need to get out of your own head more. Try eating a few steaks and go for a run. I knew someone who had that and she’s not dead. You should go travelling, the sunshine will do you good. M.E is a very yin disease, you need to increase your yang” – Emma, M.E

“Can you still have sex?” – Deborah, M.E, Fibromyalgia

“Oh you’re just a fainter (this is what a paramedic genuinely said to me. I in fact have Vagus Nerve Epilepsy so I faint and seizure often)” – Layla, Vagus Nerve Epilepsy, M.E/CFS, Fibromyalgia

“There’s nothing wrong with you. You don’t smell. You’re not a vampire (My own GP said this)” – Danielle, M.E

β€œYou haven’t really got an excuse unless you have cancer. You can still work with CFS. Sleeping in the day will make things worse. Have you read this article? If you build up exercise gradually you will get better. I reckon you could do at least 5 hours work a day. Why are you not going out?! , I think you have Agaraphobia. Have you thought about trying Yoga?” – Lizzie, M.E/CFS

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