Chronically Katie
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Category Archives: Care/carer

Brain Fog, Catch Up and Giveaway

April 26, 2013

This blog was written by Paul but dictated by Katie.  For the foreseeable future, because of Katie’s illness, this will be a common format here at Chronically Katie.

Firstly, let me apologise for the lack of content on here over the last few weeks. As I’m sure you’ve guessed, I’ve been very ill for some time now. The ‘brain fog’ which is associated with my illness has been worse than ever. It’s got so bad that I’m struggling to read, or even listen to audio books. These are the kinds of activities which is usually fill my life with when I’m stuck in bed 24/7. The most worrying development associated with this has been that I’m seriously struggling to hold conversations. It’s not because I can’t concentrate, it’s because I literally haven’t been able to understand what people are saying. When my husband speaks to me, it’s like he’s speaking another language.

As you can imagine, these recent developments have made it impossible for me to write my own blog posts. That’s why Paul is writing this one for me. I’m relaying to him everything I want said, so this is still me, but he’s helping by putting my mumblings into sentences.  This is going to be a common format for this blog over the next few weeks. I’ll let you know at the beginning of each post whether I’m writing it myself or whether Paul is acting as my scribe.

 

Chronically Katie YouTube channel

I’m not going to to let my illness beat me. I’m especially not content to let my illness stop me from doing what I enjoy. To get around this new wave of ‘brain fog’, I’m going to be making more videos on my YouTube channel. I’m really looking forward to exploring this alternative media format. I’ve already got a few videos on my channel. Please don’t forget to check them out and let me know your thoughts on them. I’m very new to vlogging, so it would be great to get some constructive feedback.

At the moment, I’m working a lot on creative outlets so be sure to subscribe so you don’t miss anything.

 

Giveaway coming soon!

Another exciting development here at Chronically Katie is that soon I will be announcing a competition giveaway. I will be revealing the prize in a later post, but what I can tell you is that it will be well worth your attention. The deal will be that only my subscribers can enter. Make sure you do subscribe to the blog now so that you don’t miss out later. You can subscribe by entering your email address into the sidebar tool. If you’re not sure whether you’re already a subscriber- do you get an email each time I post a new article? If not, then you’re not currently a subscriber.

Keep your eyes out, over the next few weeks, for more details regarding the giveaway.

As ever, thanks for reading, watching, and/or subscribing.

Love Katie x

P.s. Are you on Tumblr or Instagram? I post there regularly throughout the day, follow me by clicking the links below.

Instagram

A quick message from Paul: Knowing how much Katie loves to get mail, many of you have been asking for Katie’s address so that you can send her stuff. We haven’t been able to establish a P.O. Box yet, so we can’t publish her address online, but you can email Katie at chronickatieblog@gmail.com to request her home address. Getting mail from her readers always gives Katie a massive boost, so I can’t encourage you enough to get in touch.

Posted by in Care/carer, Disability, Fibromyalgia, Home life, M.E./CFS, Marriage, ME awareness Tags: , , , , , , , , , ,

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Finding strength in my weakness

February 24, 2013

The last week or so has not been easy. Although P is doing a little better, he is far from well. On Friday, after another week off university, he went to see our doctor. We are blessed with a great doctor who has treated us both for a few years now and has a good grasp on our situation so we usually trust her. Her diagnosis this time was exhaustion. P can’t get over his virus because his life is so busy. We’ve both made a concerted effort to cut back on our activities over the last year so there’s no option there. P does an amazing job juggling caring for me, his degree and a part time job, but sometimes even my superman needs to reach out for help. That’s where my strength lies. Although I’m still also struggling with the virus, I can organise a lot from my bed. We are lucky enough to have great friends and family to call on in our time of need.

Doesn't my boy look cute when he's sleeping?Doesn’t my boy look cute when he’s sleeping?

The next couple of weeks will be an experiment in what happens when a carer gets sick. The most important thing for the both of us though is where we draw our strength from. Although it may sound cheesy, we know that we need to rely on God to bring us through something that is too big for us. The Bible says that God is strongest in our weakness. We are believing for supernatural strength and energy to get us through to P’s graduation.

P and I would really appreciate your prayers over this period.

Love Katie x

Posted by in Care/carer, Home life Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Two pages on going to the toilet…

August 15, 2012

…that’s two A4 pages.

I finally feel well enough today to do some writing but I’m afraid it won’t be my blog or my creative writing that benefits from this. I have to re-apply for DLA (Disabled Living Allowance)- when else could you write two A4 pages on the help needed to go to the toilet, or have to estimate how long it takes to tie your shoe laces?

I’ve had the forms for months, but I just either haven’t had the energy or mental capacity to deal with it. It is so mind numbly boring because you have to give so much exact details. The examiner will use any tiny loop hole to prevent you from being approved, as has happened to me in the past. I hate to be negative, but it also feels like such a drag because you know that in a couple of weeks/months you’ll be explaining the exact same thing in your appeal. I’ve forgotten the exact statistic but the vast majority of people are rejected, only then for 70 or 80 per cent (I forget which) to be successful. In other words, loads of people who actually eligible for DLA get rejected and have to appeal.

I am very aware that some of my international readers may be feeling a bit annoyed that I’m complaining about filling in an application for benefits, when they don’t even have the option. I know I am so very lucky to live in a country where there is at least a welfare state, however unjust it may seem. Just allow me this post because it needs to be exposed, how very ridiculous the form is. The cynic in me almost believes they make it hard on purpose.

The most ridiculous question so fare has been:
How many days a week would you need help with this?

referring to help with preparing food. As if they could possibly believe that either one day you don’t eat at all or that one day a week you’re fine to prepare food on your own.

I have so much to say on this matter, but I want to structure my thoughts properly instead of a stream of whining. For now, I’ll simply say this, there’s a reason it’s taken me three months to get this far into the form and I’m only half way through. There’s also a reason why I should have appealed for more help, but Paul and I just simply couldn’t face going through the whole procedure again so we have struggled without sufficient help instead.

I’m off to write sentences such as, “without help going to the toilet, I wouldn’t be able to go and would have to wet myself.”

Love Katie x

Posted by in Care/carer, Fibromyalgia, M.E./CFS, ME awareness Tags: , , , , , , , , , , , , , ,

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Attitude of gratitude

August 8, 2012

Image source: whatsfab.ca

Today has been a much better day. For one thing I’ve managed to not only get out of bed but also get dressed. P needed to go to the train station today so mum and I thought we’d use the opportunity of being in town to get some supplies for crafts which need to be done for the wedding, and also to get me a new outfit for my hen party.

 After much deliberation about whether precious saving funds should be used to buy a new dress, we (me and P) decided that since I would only get one hen party (despite what the statistics might say), that I should feel really special. And, as mum pointed out, it can be a hen party/honeymoon outfit so that made me feel like I was a little more justified in buying something. I didn’t go crazy though, mummy took me to the fashionable boutique of Tesco and I spent a whole £7 on a new dress. I did splash out on a new jacket too which boosted the total cost up to almost £30.

 Going shopping for my hen party/honeymoon outfit has made me even more excited about this weekend. I just hope that going out for a couple of hours today won’t result in being too tired to enjoy the weekend. No, you haven’t lost a couple of days, you are correct in thinking that I begin conserving energy for a big weekend three days before the event. I did so before the family wedding on the weekend too, and it still took me four days to recover.

 I really just felt so horrendous yesterday. The pain and exhaustion made me just want to sleep away the whole day. The problem was the pain was just strong enough (even with painkillers) to keep me from sleeping most of the time. I can’t articulate how much I don’t want to be that sick after my hen weekend. I feel terrible writing these things because I know there are so many spoonies out there who would love to be in my position. It sounds ungrateful to be saying these things, it’s hardly terrible that I’m going to Bath for Saturday/Sunday. Even more so, I know I am incredibly lucky to have a mum and sister who took the time to learn how to look after me so that I could go places without Paul, and even that I can get out of my house to go anywhere, let alone on a mini-holiday.

 I don’t count these blessings lightly, I am grateful for them. When I am confronted by the painful accusations and remarks of unbelievers and have days as bad as yesterday, I become even more acutely aware of just how much worse life could be. I think my mummy is so wonderful for patiently taking me shopping today. It’s no easy feat, it means giving me so much attention, and not much time to shop for yourself. I am so privileged.

 What are you thankful for today?

Love Katie x

Posted by in Activities out of the house, Care/carer Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Down and out

August 7, 2012

 

I hope that this post doesn’t bring too much disappointment to  the regular readers of Chronic Katie when they realise that it’s not Katie writing. This is Paul, her soon to be husband, filling in for an extremely unwell Katie. It’s been a while since I last wrote on her. In fact, it’s been a while since Katie has been to too unwell to do it herself.

After a whole day, in bed,  trying to muster her strength, the following is all Katie was able to write down:

I can barely think to write. I’m so exhausted. Saturday’s wedding has really warn me out. That makes me wonder if I’m going to make it through my own wedding day or if going on honeymoon straight after is a good idea. I am so frustrated about being this ill when I still have so much to do for the wedding. That’s all I can really think of right now, my mind is just so exhausted.

Although short, I think this paragraph really gives you an insight into the bad days for a sufferer of a chronic illness. It is days like this, when chronic sufferers are exhausted, isolated and in a depressed state, that people don’t  normally see. Generally, people with chronic illnesses are only seen, or heard from, at their best. This makes it very difficult for people to fully grasp the true extremities of an ill person’s condition.

Chronic illness sufferers are constantly frustrated by ignorances and misunderstandings that doctors, the government, friends, family and even partners have of their condition. This is not necessarily anybody’s fault, as I said, people aren’t seen on their worst days. These  misunderstandings are, however, exactly what this blog set out to counter. I am proud to be able to help raise awareness and support Katie when she’s too sick to do it herself.

P.

 

Posted by in Care/carer, Depression, Fibromyalgia, M.E./CFS, ME awareness, Uncategorized Tags: , , , , , ,

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Unlike Peter Pan I’d like to grow up

August 1, 2012

P has gone to Cardiff for a couple of days to sort some things out (pay rent, etc) and take the opportunity of having no distractions there to revise for his remaining exam. While he’s been away my mummy has been doing a great job of looking after me. I hate putting so much extra work on her, but I’m very glad to give P a couple of days of complete rest.

Having my parents become my sole carers (they’ve been jointly caring for me with P while we’ve been home) makes me more aware of how being sick has made me very childlike again in terms of my dependency. I am doing a little better since I began this blog, but there is still so much I can’t do. It frustrates me to have to ask my mum to help me get dressed and not even be able to make a cup of coffee for myself.

Love Katie x

Have you enjoyed reading this blog post? Please consider voting for ‘Chronic Katie’ in the Cosmo Lifestyle Blog Awards 2012. For more info click here.

Posted by in Care/carer Tags: , , , , , , , , , , , , ,

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Access denied

July 26, 2012

I’ve been thinking about how great a day I’ve had at Oakwood in my long periods in bed. Yes, I’m paying for my weekend of fun now, and I had to take a much higher dose of painkillers than I’m supposed to, to be able to do it, but, some days are just worth it. Sometimes occasions are just worth all of the pain, in order to not miss out. P has been wanting to go to Oakwood for literally years, I wasn’t going to let this opportunity pass by.

 My ability to go to Oakwood and enjoy the day was made so much easier by the fact that Oakwood had already made provisions for disabled people, and not just those they have to by law. It was great that I had access to all the rides, although I felt guilty about skipping the queues. It’s frustrating enough that there are lots of places I can’t go because it isn’t possible to make them accessible, so I’m thankful that there are laws that require those places which could be accessible, to be so. I find it infuriating when I could easily have access to somewhere (for example a restaurant or a shop) if minor adjustments, such as a small ramp, were made, but I can’t because those provisions aren’t made.

It sometimes feels like everywhere I go there are problems. When I first had to start using a wheelchair I felt like such an inconvenience, living a normal day life was suddenly full of all these obstacles. All at once your eyes are opened to these problems all around you, these tiny little problems that all mount up. No drop curve, people won’t move for you to pass, a display stand in the aisle makes it impossible for you to pass, a step into a shop, the disabled access door is broken and hasn’t been fixed, the lift is full of people who don’t want to take the escalator located a few metres away. All of those things happen every time I go into the city centre. I realise that I am so lucky to have P there with me. It’d be impossible on my own. P and I have had to develop a lot of patience.

It was quite a treat then to have access to everywhere on day at Oakwood.

Love Katie x

Posted by in Activities out of the house, Care/carer, Social activities Tags: , , , , , , , , , , , , , , , , , , ,

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The lesson I never seem to learn

July 21, 2012

As my regular readers know, I’ve moved home to my parents’ house for the summer to save money, get some rest, and give Paul some help with caring for me, while I’m needing so much care. Well, so far only one of those aims is being achieved, my mummy, bless her, has been running around after me all day, especially since my bedroom is upstairs and I’m really struggling with the stairs.

 

My school friends are home, and since I never usually manage to see them, I’m trying to catch them all before they return to the various parts of the country, and so my diary cannot fit everything in. I’ve already run myself raged, and in doing so, P and I, while having a great time, have spent the same, if not more, than we usually would living in Cardiff.

 

That’s part of the reason this post is coming so late in the day. When I got home from the cinema last night, I got into pelvic pain and had to go to bed. It was a bit embarrassing because the friend I went with had a guest, but I just have to get past that. I started reading to take my mind off the pain and was asleep within a couple of minutes. I slept straight through until 11pmish when I woke up in terrible pain. Despite taking painkillers and rubbing a lot of Tiger Balm on my legs, my muscles were hurting so bad I wanted to scream. A long story short, I was awake until past 4am. I still feel rough this today but I needed to get a lot done so I had to get straight out of bed.

 

One of the main problems for me at the moment is that my parents don’t have wi-fi. While, clearly, wi-fi is a luxury, it’s causing me problems in keeping up with wedding plans and this blog in particular. Getting downstairs is painful, getting upstairs feels impossible. I do manage to do it, most of the time, with a walking stick, but it takes so long and is very painful. That means that I can’t get online until I’m well enough to get out of bed and my legs are good enough to bend to sit in a chair. I’m trying to work out a routine but because P and I have planned so many things, it’s proved very difficult.

 

My resolution then, is that after this weekend, I will start cancelling more activities (especially if they cost a lot of money), begin a to-do list to get through and get myself into a routine.

 

Wish me luck, I’m off to update the wedding website!

 

Love Katie x

P.s. I shall be eternally grateful to anyone who votes for me in the Cosmo blog awards, and send kisses to those who ask their friends to do the same.

Follow this link for more information/instructions

Posted by in Activities out of the house, Care/carer, Social activities Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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Chronic Summer Holidays Part-one: The Green-eyed Monster

June 23, 2012

Our dream is to travel so, if we’re honest about it, we’re always jealous of our friends who go inter-railing or holidaying with partners or families. Please don’t read that as us resenting those friends, because we don’t, we’d just love to go with them (insert laughter). It doesn’t need to be abroad, we’d love to see a West-end show or visit a museum in London or Cornwall. Heck, we’d love just to visit relatives. I have to admit, and I hope it doesn’t make these friends feel guilty to read this, but I had a lump in my throat seeing photos of friends visiting the Harry Potter film sets. We love HP and are desperate to go. In fact, I was rude enough to ask a bit too enthusiastically for them to buy me a souvenir (sorry about that!). Not only was I jealous, but even worse, I couldn’t help feeling like if I wasn’t sick, Paul and I would be with them.

Plus, it’s carers’ week and I kept trying to think of a way we could go there on a day trip, or go anywhere outside of Cardiff city centre on a day trip, but I’m coming up blank. (Any suggestions welcome)

Maybe part of the reason I lost touch with some friends when I got sick after my ‘a’ levels is because it was too painful to hear about all the things they were doing, things I should have been a part of. When you’re sick, you want the world to stop turning so you don’t miss out on anything. It’s not that I’ve ever blamed or disliked a friend for carrying on with their lives, but I guess part of me wanted them to want to make my life great. I have been lucky enough to find a partner and a best friend who will exchange a day on the beach for watching films and playing board games in bed. It was selfish and greedy of me then, to want a whole group of friends who would turn up at my house with the sole intention of giving me an interesting day, on top of them.

Paul and I in Bruges, January 2012

It’s easy for me to get upset and feel sorry for myself- and I do sometimes. But, then I remember that God is good and has already given us some great opportunities, like planting Church in Bruges in January. I’m also trying to keep in mind that we’re hoping that this September P and I might get to fulfill a dream we’ve been talking about since we first got together- going to Paris on honeymoon.

I don’t say (or write) these words lightly, I still well up sometimes when I think of things like the tour of America I was supposed to go on with friends when I was 18. I still have to give myself the reality/pep talk at times like yesterday when my friends when to the HP film sets. When I think of what I’d have to exchange if I were to turn back the clock and undo my illness though, I’m not sure I’d want to…

Love Katie x

p.s. This topic will continue tomorrow.

Sensitivity disclaimer- This blog post is in no way intended to make any of my friends feel guilty or sad.

Posted by in Activities out of the house, Care/carer, Social activities Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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The first act was good but…

June 19, 2012

Today started so well. Paul and I went to the doctors in the morning and then to a cafe to use the wifi. Milgi (the afore mentioned cafe) is one of the best places, if not the best, to get a drink so it was nice to go out there. I did manage to resist the temptation to have one of their amazing cocktails. While there I managed to get quite a few things sorted and post a blog. I was starting to get tired when we left, I’d expect that from being out all morning, but I was fine when we had lunch back at home. As soon as I started reading in bed after lunch though, I just couldn’t keep my eyes open, and now here I am at 8.30pm having just slept for 6 hours, still feeling tired. Tonight would be perfect for a trip to the cinema but I’m just too wiped out to leave bed.

More worringly, Paul has been feeling a bit under the weather for the last fortnight or so, but this week has been sleeping loads. We went to the doctors today, who are going to do blood tests. I’m concerned that he’s just plain worn out. The poor thing still has to repaint this flat and move to do at the end of the month. He’s supposed to be going on a guy’s night away with Church this weekend, which he would usually be really excited about, but he just thinks he’s going to be too exhausted to go now. Going home for summer is seemingly like a better and better plan by the day.

What question is burning in your pocket?

I realise that for many people understanding chronic illnesses like M.E. and Fibromyalgia can be difficult. Maybe reading this blog has just led you to ask more questions, instead of answering them. I want to give you the opportunity to ask those questions and hear my view on them. You can ask whatever you want, I mean that, there is not a no-go area on this. If you have a question to ask then simply pop it in the question box and I’ll answer it in an upcoming post. The comments box allows you to ask anonymously.

Example questions:

How did you manage your illness during your school years?

My friend has M.E. but she doesn’t need a wheelchair. Do you have the same illness?

How do you manage the physical side of your relationship with your illness?

 

Love Katie x

P.s. Don’t forget Carer’s Week began yesterday. For ideas on how to honour the carer you know, read my earlier blog post here.

Posted by in Care/carer Tags: , , , , , , , , , , , , , , ,

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