Toes, knees, shoulders and head – Chronic Illness Challenge, Day 30! 

Finally, starting with your toes and working your way up to your head, name each body part and how you Illness effects it, then say something you like about it. 

Well this could be interesting! 

  • Toes – my illnesses cause problems with all my joints and muscles, but, specific to my toes (lol)… lets see. I fall a LOT (according to the fall prevention team) and once fell down the stairs and broke my toe. Also when my immune system is particularly bad my toe nails fall off (ewww!). Things I like about them, erm.. I only broke the one, I have another 9 and at least it wasn’t a broken leg. 
  • Ankles – once again with the joints and muscles. My right ankle is more of a problem than my left, it crunches if I move it too fast and gives way when it fancies it. I like the fact that the left one doesn’t do that! 
  • Knees – my knees are both problematic, they like to give way when they fancy it. I suffer from water on the knee on the right one but strangly not the left, it needs draining sometimes but I mostly deal with it. I like that my knees aren’t badly affected joints! 
  • Legs – legs in general. My muscles are all weak, partly directly to do with the illness, partly because of time spent wheelchair and be bound. They take a while to get moving every morning and sometimes they refuse point blank to accept any body weight at all. Sometimes I am left completely unable to weight bare on them and I am almost always using some kind of walking aid to get around (mainly upstairs where I can’t get my wheelchair). I’m usually in some kind of pain In them.  Good things about my legs, they usually WILL weight bare, usually with the help of my wheelchair and walking aids they do let me somewhat independent. 
  • Hips – I have pirifotmis syndrome which  causes problems with the muscles that connect the hips to the base of the spine. I am always in pain with my hips or my back and my right hip dislocates a lot. But I have quite wide hips which I like because I think it helped with my pregnancy with Wildchild. 
  • Stomach (and all the stuff in it lol) – I have IBS and gastritis which makes it eating a bit annoying. But I like the fact that these conditions are manageable and that my body provides a home for Wildchild. 
  • Chest – I have asthma and problems with the muscles between my ribs. But I’ve always liked my boobs! 
  • Neck/back – my spine is curved in two places, causing my ribs to be deformed, my neck curves the wrong way and I have an anteriorly slipped disc in my lower back. However I do have this chunk of apparently perfect spine in the middle of my back. I’m very proud of my perfect bit!!!! 
  • Arms/wrists and hands – my arms like to jerk and twitch uncontrollably, which often causes me to throw things. It’s embarrassing, annoying and dangerous. I have had tendinitis in my right wrist since I was in high school. But I like what I can use my hands to create, to craft and to crochet. 
  • Head – I have cervicogenic and thunderclap headaches, which are not fun. I also have almost costant brain fog to differing levels of severity. I do however like the creativity that comes out of my brain. The side of my brain that allows me to live in the fantasy worlds of audiobooks! 

So, that the 30 day challenge done! I’m so proud I managed to do it! I came out of the chronic Illness closet! It’s been a difficult experience, hard to write, probably hard to read and I’ve (sadly) lost a few friends along the way. But overall, I think, it’s been worth it to raise a tiny bit of awareness of what life is REALLY like with a chronic Illness. 

Thank you for reading and following me on this journey. I’ll take a few days and then I’ll be back. My dad wants to guest blog and tell people what it’s like from his perspective! Which will be interesting to read! 

See you soon!!! 

You don’t always have to be thankful that it isn’t worse – Chronic Illness Challenge, Day 29. 

What helps you to cope with the stress of this lifestyle? 

Today is going to be another shot and sweet entry I’m afraid. I woke up 5am with a temp of over 40 so I’m feeling pretty rubbish. 

Anyway to answer the question a few things:

  • Writing EVERYTHING down. Brain fog means I forget easily and then anxiety means I worry about what I’ve forgotten. So I write everything I need to remember (or even may need to remember) down. What ever time of the day (or night) it might be). 
  • Budgeting. One of my biggest anxiety trigger is money, it would be a billion times worse if I didn’t keep such a close eye on what I’m spending. I know what comes out when, what needs to go where, what needs to be saved as emergency money and what needs to be kept back in case Wildchild needs anything. My budget is written down so I can remind myself when I’m having a bad brain fog time and if I still can’t think through it I can show it to someone else. 
  • Understanding support system. Being able to open up and really talk honestly to someone about how you’re feeling can be incredibly helpful. The majority (not all but most) of my support network are online. They  are reliable, honest people who may or may not have an understanding chronic Illness but are always, ALWAYS, there to listen when I need an ear. They will be honest with me and give me good advice. 
  • Being honest with myself. I now firmly believe that feel guilty for having days where you are sick of your conditions, depressed and just want to be normal is entirely counterproductive. I am NOT normal, I HATE being in pain, I HATE having so many physical limitations, I HATE being stuck in the house, I HATE my chronic collection and it DOES totally suck sometimes. Sometimes I am NOT okay and that IS okay! Sometimes I need to let myself be upset, I need to let myself grieve so that the next day (or the day after) I can get up (metaphorically speaking) dust myself off and get on with getting on. 
  • Focusing on what YOU can do NOT what you can’t. 
  • My family. Especially WildChild. 

Sorry it’s so short. I just can’t manage anymore today. I hope it makes sense! 😘

Take that chronic collection! – Chronic Illness Challenge, Day 28 

Name five things you have achieved despite being ill.

Okay, here goes in reverse order:

5) I still got my degree in Midwifery. Granted I cannot practice as I don’t have a PIN number but I am so happy that I managed to get to the end of the degree. Perhaps one day they will find a cure, and it’ll never be too late for me to try again.

4) Move out. – When I first got sick I thought that leaving my childhood home would be impossible. Thankfully I was wrong!

3) I have job. Okay so it took me a decade to find one that I could manage, it had to be basically written around me and it’s only for 3 years but I am useful to society again. I can help people and I can use my experiences to do so, and that, that almost makes everything worth it.

2) Getting Married – I didn’t think I would when I started to get ill. I kept informing Chris that I was a burden and that he was missing out on being young because of me. Just because I was sick and didn’t get to go out or have fun didn’t mean he shouldn’t. I told him to leave me multiple times, I think I even begged him to once. He knew I was asking him because it was better for him and he didn’t exactly agree with me. I’m glad he didn’t! We got married in 2008 and I even managed to walk down the isle! With my actual legs.

1) Becoming a Mum. This is something I honestly, totally, completely and utterly viewed as an impossibility. Not only was I told that I would be unable to get pregnant on the extensive meds I was on, but I was convinced my body could not hold on to a pregnancy, but Wildchild had other ideas! Probably a good thing as I would NEVER be without her, she is my reason to fight, to carry on. Okay so pregnancy wasn’t easy, my GAD made an appearance for the first time (don’t get me wrong I would rather it would be bad in pregnancy than bad when I’m not pregnant), I was hospitalised, I bled a lot at 34 weeks and was gestational diabetic. But I would do it all again in a heartbeat just to have her. Will I have any other children, I won’t rule it out, but I doubt I’ll ever be fully capable of making an actual decision to do so. As far as I’m concerned I am beyond lucky to have Wildchild and I’m so happy!

There’s always something to be thankful for – Chronic Illness Challenge, Day 27

What is the best advice you have received? 

The world is full of people wanting to give “advice” to chronically sick people. Often this is not particularly useful or even realistic advice. Here are some bits of not useful advice that I’ve been given over the years: 

  • Maybe if you slept more. (I could sleep all the time and I wouldn’t be any less exhausted). 
  • Maybe if you had a job. (I have got a job). 
  • What if you got out more? (Going out makes me worse not better).
  • Are you sure you’re not getting older? (I’ve been ill since 16, most 16 year olds don’t feel like a 90 year old). 
  • If you’d get more exercise? (Seriously? Heard of PET?)
  • Are you sure it’s not just in your head? (Yes I am sure. Don’t even start me in that one!). 
  • Are you sure you’re not depressed? (It is not in my head. Yes I’m depressed but you would be too if you were in my situation). 
  • Remember there are people worse off than you. (Yes, I am very aware of that and very grateful, trust me, it’s what keeps me going on my bad days. BUT there are also many people better off than me and I am allowed to have my bad days and that is okay!). 
  • Have you ever considered just toughing it out and pushing through it? (*sarcasm alert* nope, never, not once did that thought occur to me, it’s not like I worked my way into a wheelchair and then into my bed for 18 months, oh…. wait…). 
  • My cousin/wife/aunt/best friends dog had that Illness and she had (insert ridiculous, expensive, unproven treatment here) and she’s fine now. (Good for you for you cousin/wife/aunt/best friends dog, I am so glad she is recovered. Have you studied that ridiculous/expensive/unproven treatment, do you know how it works? Is it backed up by peer review? How badly did they have my Illness because I know that the chances of me recovering at my previous severity are slim to none. *shocked look* okay then, shall we move on?).
  • Have you tried having a more positive attitude? (I have got a positive attitude. It’s something I cling to, something I try my best to hold on to to get me through). 

The best advice I have received have been from other sufferers.

  • Trust your body, believe your body, fight your corner and stay strong. 
  • It’s okay to have bad days, everyone does, just don’t let them rule you.
  • Look for the positives because even in the darkest times there are always things to be thankful for.
  • Learn to pace yourself!!! Only ever do 80% of what you think you can do, that way you’ll never over do it. 
  • Don’t look at equipment as “giving in” or “giving up” they are often the ticket to freedom. 

THAT right there is REAL advice, that shows understanding and is actually helpful in the life of a chronically ill person. 

And in honour of world book day, have a very fitting Harry Potter quote. 

The Positives from the Negatives – Chronic Illness Challenge, Day 25.

Name 5 activities you have managed to pursue while being ill and 5 that you would not have considered had you not been.

I’m taking activities to mean literally anything I am physically capable of doing so here goes.

  1. Crochet – I LOVE to crochet. I had never picked up a hook until about 5 years ago. It is so relaxing. It’s something I am capable of doing, that I can watch grow, turn into projects and presents. It takes concentration and focus when learning but once you know what you are doing it’s easy and repetitive, it calms my mind and my anxiety. I may be a little addicted to it in fact.
  2. Knitting – I tried knitting, I am NOT good at knitting. I can do the basics, but I suck at following patterns and I get confused and frustrated, plus, the work grows so much more slowly than in crochet. So yes, knitting is another activity I can technically do, although I choose not to!
  3. Writing – I used to write poetry when I was younger as a way of dealing with depression and anxiety, I suppose I still could but it seems to required just a little too much concentration. So I write things like this blog and my general thoughts and ramblings to get them out of my head. It’s something I can still do even though I’m sick, granted I write less than I would like to, it never happens all in one go and I can only record short sections at a time but I CAN do it!
  4. Audiobooks – I have always loved to read, loosing myself in a fantasy world, getting out of my real world I suppose. As I got more and more sick and my cognitive function became more and more impaired I had to find another way to loose myself in those worlds.
  5. Documentaries – I always enjoyed learning, about pretty much anything actually. I have two degrees and would do multiple online free courses. When this was no longer possible I took to watching documentaries on TV when I was well enough to stand to watch TV, or setting them up on youtube and simply listening to them. It allows me to keep learning but without the level of energy expense and commitment.

Okay, so now for the activities I would not have done had I not been sick. I don’t know for sure but let’s try it.

  1. Sewing – I have recently started sewing small amounts when I am well enough. I couldn’t tell you for sure whether or not I would have taken up this hobby without my chronic collection but what I can say is that it has been my symptoms that have encouraged me to. I have skin sensitivity and I find it very hard to find clothes to wear that are bearable or, heaven forbid, comfortable. This led me to the conclusion that if I could learn to make my own I could play around with them, adjust them and eventually make my own comfy clothing. My parents even got me a overlocker as a delayed 30th birthday present (I’m 32 now but haven’t been well enough to celebrate my 30th so this was a good use off the money) to make it easier, which it does now  have got the hang of threading it!
  2. Crochet – As I said before it is now one of my favourite things to do, but I doubt I would have even considered taking up the hobby if I wasn’t so sick. If my hobby didn’t have to be able to be performed in a sitting or semi-sitting position.
  3. Babywearing – Once again, not something I am 100% sure that I wouldn’t have done even without my illnesses but the reason I started babywearing with Wildchild was because I needed to be able to push myself and look after her. I love babywearing it was such an amazing experience and something that I am so happy I got to share with Wildchild. So much so that I went on to become a babywearing peer supporter and then, a couple of years later a babywearing consultant. Although I don’t practice as a babywearing consultant because the insurance is too expensive without be being able to commit a certain amount of hours it is brilliant to have both the knowledge and the qualification and it really helps with the next point on this list!
  4. Internet Admin – Once again I may have volunteered to put myself in these positions without having become chronically ill, but those groups I admin are babywearing groups. Babywearing groups that I believe I would not have been involved with had I not taking up babywearing because of my disabilities. So yes, I am part of a couple of admin teams that admin multiple large babywearing groups on facebook. Being a qualified babywearing consultant helps me to give advice that is safe and in depth. My disabilities give me an added bonus of being able to directly understand how difficult babywearing can be with physical limitations allowing me to give extra advice from personal experience.
  5. My Job – If I wasn’t chronically ill I would most definitely have a job, but not this job. A different job, a better paying job probably, one with more hours and more responsibility. But I would not have THIS job, which I LOVE. Which I am so amazingly thankful for, every single day. The charity was inspired by people like me who have been stuck in seemingly hopeless situations, without a clear and obvious way out. Without me having gotten sick and ended up in these situations IG may not be around, it may not be helping the people that we are helping.

So who says chronic illness is all bad right?

What Social Life – Chronic Illness Challenge, Day 24. 

How have you managed to juggle your social like throughout your Illness?

Firstly another short but sweet entry I’m afraid, really not doing well right now. So cannot spend a lot of time actively doing anything, let alone something that involves a screen. Thankfully the subject doesn’t really leave me with much to say.

My social life, well what social life? I probably go out socially once or twice a year, for a maximum of 2 hours each time. I have to rest more than usual for about two weeks before and the payback is almost unbearable so these social encounters tend to be limited to important events such as weddings.

Managing even my nonexistent social life is still a pain. Every event I am invitied to has to have a serious amount of consideration. How long will I have to rest prior to the event?  How will I get there and back? Does the venue have wheelchair access? Are there people attending that I am not happy seeing me ill? Is it going to be loud/bright/both? How many people will be there? How long can I go for? What meds to I need to bring with me? Is it important enough to me to suffer the payback? Most of the time the answer to that one is no, maybe that should be the first question, would save having to think about all the others.

Basically my “social life” is limited to in house stuff with family and very close friends (even then with regular rest periods). School runs (with support from mum/dad or other school mums).

Then, of course, there is the place where my nonexistent social life ended up. The internet. Thank God for my online friends, spoonies and non spoonies that have loved me, helped me and supported me through so much!!!! You are awesome wonderful people and I’m thankful for you every single day! Mwah!

This too shall pass – Chronic Illness Challenge, Day 23. 

What do you say to yourself when you need a pep talk? 

This isn’t hard to answer, not really. I am a big advocate of positive thinking, I doesn’t treat the disease itself and it definelty doesn’t cure it but it can make a big difference to your feelings and emotions surrounding it. At many times in my history with my chronic collection it would have been so easy to roll over in bed and accept “this is my life now” and give up trying, give up hoping, give up gaining ground. At my worst when I was bed bound for 18 month it would have been easier to do that, to think that that was my lot and just stay that way. 

I am not saying that positive thinking made me able to do things, totally not the case. Bed bound people are not simply a few positive thoughts away from a wheelchair, no, just no. But for me, about 10 months to a year into my stint in bed I decided that if there was anything I could do to make sure that I didn’t stay like this for ever then I was going to do it, and I was lucky because eventually (and yes it was about 8 months before I showed any progress) I began to move forward in the most tiny, most insignificant steps. May have been massively off putting or disappointing for someone else but more me, I chose to focus on them, cling to them, make them count. It was then that I found, positive thinking helped me. Not my physical conditions, thinking positively about having a leg when you are missing one isn’t going to make it grow back is it? But the mental side of my Illnesses are definitely boosted onto the good side by positive thinking. 

I’ve also learnt, over time, that it’s okay to have bad days, down days. It’s okay to cry, to scream, to sit in the dark and watch Netflix all day. That although I may have it much better than some people I also have it much worse than many more. So if I get tired of holding it together and I just need a break from “I’m okay” land it’s okay to take a day or two to simply being sad and acknowledging that my life isn’t what I thought it was going to be. To despise my health and my limitations. To grieve for the wife I wanted to be, the mother I wanted to be, the person I used to be. But that’s the point it is ONLY a day or two, then (thankfully, as I’m lucky) I can pull my shit together and go back into “I’m alright, I’m fine” mode, because I had a break. 

So yes, what do I say to myself when I need a pep talk? Well after I’ve judged where I am on the “coping” scale I decide if it’s time to let it go, if it is, I do, the positive pep talk stuff can wait a couple of days until I can stomach it. If I’m still well within range I look back to how I’ve been and how much better I am now than I used to be. I look at other people that are sicker than me but that manage so much better. I become thankful for how relatively good my life expectancy is in comparison with others. And, if all else falls, I simply repeat:

“This too shall pass”