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! 😘

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”

Fight for it – Chronic Illness Challenge, Day 22

How do you feel you have been treated by the medical system? Explain. 

Well, urgh, part of me really doesn’t want to answer this because I have so much respect for the NHS and it’s employees. For the care and compassion they provide in an increasingly difficult environment. 

But when you mix the medical profession with some chronic illnesses you come up against issues. ME is one of these conditions. As I have mentioned in previous blog posts there is a lot of people that disbelieve the exsitance of ME, sadly many of such people work within the NHS. 

ME is recognised by the World Health Organisation (WHO) as a neurological condition and has been since the 1960’s, there are also NICE guidelines on how to treat it. Thus, you would think that all medical professionals would take it seriously, but sadly this appears not to be true. 

I have been told that my condition is “all in my head”, I have been treated like I was going mad until I was actually convinced I was. I have been told my other doctors that my condition “does not exist”and that I’m silly. I have been denied treatment and various referrals because it’s “just ME” or it’s “just Fibro”. My life has been made more difficult both physically and emotionally because of other people’s inability to empathise, understand or, it seems believe and follow the findings and guidance of their profession. 

That said other GP’s have been amazing, pushed through referrals, put up with me in tears at appointment, got me the help I needed and have written amazing letters that have helped me get the support I have in place. There are two particular GP’s that have been there for me every step of the way, including during my pregnancy with Wildchild and I cannot fault them. 

The nurses and consultants I have seen in my time have been kind, compassionate, empathic and have really wanted to genuinely help me. They have listened to everything I have had to say and taking me completely seriously, coming up with plans to help me as best they can. They have improved various parts of my chronic collection to the point where they are bearable and manageable. They’ve provided me with water, held my hand as I’ve cried and sat with me when I needed someone. 

When I was hospitalised when pregnant with Wildchild, the midwives and ob-gyn doctors took note of my ME care plan and put me in a side room, with dim lights and tried not to bother me when it wasn’t necessary. Also, knowing that long term hospitalisation would likely cause me more harm than good they arranged for me to go home, and visit the hospital daily for monitoring and tests. Obviously not ideal but much better for my health than a prolonged inpatient stay. Community midwives came to my home when I was too unwell to attend clinics, visiting me at my parents home when I had to stay with them during the day. Without question, without argument. 

When I have had to visit A&E (Emergency Room for those Americans reading) they have always been amazing kind. You see, a few of my conditions, when viewed together often trigger their protocols for things like sepsis and cardiac problems. I go in when this happens as one day, the likelihood is that one of this things might happen and I will miss it, putting it down to existing conditions. They work on the principle of “better safe than sorry” and I’ve been told multiple times they would rather see me and it be one of my chronic collection acting up than not see me and it be something else. I will regularly sit there and apologise to everyone I see, telling them that I’m sorry for wasting their time. They always smile and inform me that I’m not. 

For example, my last A&E visit was last year, when I was two days away from going on holiday. I suffer from recurring infections for which I always have emergency antibiotics to start taking if certain symptoms arise. This particular time I had about half of my normal symptoms but was going away so I phoned 111 for their advice. Of course I ticked all their boxes for A&E and because of the impending holiday I went. Apologising the entire time, as usual. They took me in, triaged me immediately, took an ECG and sent me to ACU and took bloods. A doctor came and after a chat with me (with me still apologising) decided that although my readings were abnormal in the general scheme of things that were normal for me, if I had an infection. They sent me home and told me to take the antibiotics. But they understood and were happy I came in and get checked over. 

So, overall, my experiences with the medical profession have been positive. The majority of doctors have treated me well and all the nurses, consultants and midwives I have been amazing. The problem is the negative experiences I have had have been hard hitting and made a huge impact on my experiences through my illnesses. I am also nervous about seeing new doctors and new consultants. I’m always anxious they will be another professional to add to my “don’t see” list. 

Anyway, the point is, I would never dream of being negative about the NHS. It has its problems right now but the NHS itself is not to blame. The people that work within it do so out of a genuine love of helping people and caring for people. I would be much sicker if it was not for the NHS it is amazing system that needs to be invested in, understood and appreciated. It needs to be loved and cared for, and saved. I am so completely thankful that I have access to healthcare that doesn’t cost me a fortune. Where I don’t have to suffer just because I am poor. The NHS is the most amazing healthcare system in the world. Fight for it. 

“The NHS will last as long as there are folk with the faith to fight for it” – Nye Bevan

With a pinch of salt – Chronic Illness Challenge, Day 21 

What networks or websites have you used for support or information about your illness?

Well yesterday I talked about my favourite and the website (and community) I found most useful when I first got sick AYME. It provides community support for young people with ME up to the age of 24, but is also a brilliant source for information about ME and areas that are particularly relevant to young people with ME (such as advice about explaining to schools, friends and university). 

I have also used the ME Association as a source for information as well as Solve CFS and ME Research but they are more for investigation and research than for support. 

When it comes to Fibromyalgia I have been know to use Fibromyalgia Action UK and Fibroduck Foundation for support and information. 

Other websites I’ve found useful over the years for things like Astma, Allergies, Anxiety and Depression include;

Websites for medical information include NHS ChoicesElectric Medicines Compendium and WEB MD UK.

And I’ve got help with medical related bill reductions and/or benefits from Turn2Us and Citizens Advice

There are many Facebook groups and pages that provide support and information and I have been given ideas, research and found friends on many of them. 

It is important to note that any information you find on the internet could be anything from biased to outright lies. The websites I have listed above are all trustworthy but until you know enough about your condition/s to tell truth from lies make sure you stick to sites scientifically backed up. 

And whilst forewarned is forearmed and information is vital to managing most chronic conditions always take information gathered with a pinch of salt. Mix it with your own knowledge and experiences, search for information backed up by scientific research.