Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

The Disappointing Truth. 

Are you feeling better today?

I get asked this nearly every day of my life. Or something similar. The answer? Well, that depends on who you are. An acquaintance gets Yeah, much better today. Thanks! Family, they usually are told I’m doing ok. 

But there are a tiny few who get the truth. Some are told how, one issue may have improved, but another is ten times worse. How, the virus everyone else has got over is still crippling me a month on. How, everything hurts. Some are even let in on the fact that I’m down. That, though I love my husband and children, I miss being me. I’m lonely stuck in my bed day in day out. I wish with all my heart I could be the tiniest bit spontaneous or fun. Even fewer are let in on the feelings of jealousy, that I hate myself for. Longing for the life others have. The life without pain and illness. 

But why only a few? Why do so many get the lie? I’ll tell you why. Because the truth disappoints people. 

Every time someone asks how I am, I know the answer they want. Everyone wants to hear you’re better. But for someone like me, better doesn’t really come. Even my good days are most people’s bad. Yes, I could still tell the truth. But then I’d have to have the awkward moment where people don’t really know where to go with the conversation. Or I’d have to be upbeat and laugh it off, be tough. I don’t always have the energy to be tough. 

I tried it for a while. I put it all out there. No holds barred. Someone asked me, I told them the truth. It didn’t last long before friends disappeared. I was told I was wallowing in my health problems, becoming a ‘martyr’ to them. A so called friend even told me how I always brought her down, and I should think more about how it impacts others to hear such depressing things. She then kindly extricated herself from my life. The thing was, she wasn’t the only one who told me how much of a burden I was. 

So I learned my lesson. I built my walls. I put on a smile and tell the world I’m fine! Thanks for asking xx 

You know who your REAL friends are. 

Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met? 

Of course I do have a couple of normal friends. (Literally two.) Women who have known me since high school, and I know will always be part of my life. Women I’m eternally grateful for. Plus, there’s my husband, who’s my best friend. But, other than that, the people are rely on are thousands of miles away. 

How can this be?? Well, when living with chronic illness it’s hard to find people who understand. I’m very lucky, because those in my life always try their best. They treat me with kindness and patience, and bring humour into my life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it TRUELY feels like to live in my shoes. (Something which I’m happy about, I would never wish this on them.) Hard for me because I constantly wish I could keep up, or do better. Like I have to justify myself, even though I don’t. 

So, as you can imagine, life can be very lonely and frustrating. Feeling alone whilst wrapped in the loving bubble of your friends and family is one of the most challenging feeling that accompanies chronic illness. Because of that, I sought out support groups. I wasn’t well enough to go out and physically attend one, (plus finding one locally that matches my rare illness would be much like finding a needle in a haystack) the Internet became my searching ground. Facebook in particular. 

I soon found several groups, and over zealously joined them ALL. Finally, people like me!! Except no. I soon found out that every group has a different dynamic, and some people in them are just craaaaaazy. It takes time to find a place to fit in. Over the years the groups I’ve used have changed and evolved. They’ve shrunk significantly. But now, now I have my friend base. 

I’m in a small group made entirely of women. Those women understand me, and it is EVERYTHING. We support each other on hard days. We laugh. We cry. We take the mic out of this health crap in a way only people suffering can. We care for each other. Isn’t that what makes a TRUE friend? Knowing that someone is in your corner, no matter what? 

No, I’ve never met these amazing women in person. But they know the bones of me, and I them. They literally saved me on my darkest days. My prison of my bed is not as lonely with their chat and banter. My achievements are less feeble to those who know what an effort just being is. My life is more enriched. I can enjoy my other friends and my family more, because I can air my frustrations with those who understand. 

If you are living with chronic illness, I urge you, please find your friends. Find the group of people who do not judge, and will be there on those dark nights. People who will laugh with you at the dire straits you live in, and it’s ok because they’re in them too. In this day an age, nobody has to feel alone. Your friends are out their. They might just be on another continent. 



You didn’t just go there?

I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.

So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.

But you’re used to it.

This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.

Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.

What are you using that for?!

Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.

Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.

It must be nice getting to stay home all day.

I’ve even been called lucky. Lucky. (Just let that sink in.)

I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.

I wish I could be a stay at home mum.

This fits in seamlessly with the above comment.

You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.

You want rubbing out and starting again!

Someone also once kindly told me I needed putting down.

I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.

I feel so sorry for you.

There’s many other ways of saying this. But they all boil down to the same thing. Pity.

I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.

So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.