A whole new decade

I turn 30 this month and the thought of that it is making me incredibly reflective.

Not many people like getting older but I can’t say that it is something that has ever really bothered me. Until getting ill that is.

I was diagnosed in November 2010, just three days before my birthday. So you see it’s always a time when I get quite melancholy. But the thought of entering a whole new decade and leaving my twenties behind is something I’m actually finding really challenging.

Over 80% of my twenties will have been dominated by illhealth.

That is not to say that there haven’t been momentous times, particularly over the past few years. People LOVE to point out the positives and try to find solutions when we might confide in them that we’re struggling with something like this. Many interpret me struggling with turning 30 as me being ungrateful for the wonderfulness that is my little life. If you’re wanting to reply with a list of the lovely things that have happened in my twenties since being ill, please save your time and energy. The proof of those incredible times are framed and hanging on my walls. They are the things that continue to give me hope that more loveliness is to come.

I feel lucky that I have never been the type of person to aspire to certain things by a set deadline. I did not want to a married by a certain age. I didn’t have a set profession in mind that I wanted to be a part of by a certain age. While it never entered my head that I wouldn’t have children by now, it was never a desire or dream that impacted heavily on my life. So while my life isn’t quite how I envisaged it would be, I am not crushed by disappointment because I had never imagined a future where I was anything in-particular.

I did however only ever see myself as healthy; a fully fit member of society; someone with a job; someone whose weekends were things to look forward to; someone who made plans with their friends weekly. Ultimately I imagined myself as someone FREE.

When I was diagnosed in 2010 and told by the neurologist to have a “quiet Christmas” and see how I was in a few weeks, I never envisaged that my life would still be ruled by such a restrictive illness.

Of course age is just a a number, but it signifies the passing of another year. For the majority of people with chronic illness every single birthday is hard because we it marks another year of illhealth and suffering and no full recovery. Our lives are passing us by and we are simply unable to fully participate in them. And to be moving into a whole new decade feels very different.

I feel the sympathy that most people feel when they hear about someone in their teens or twenties is suffering so acutely doesn’t seem to run through and apply to those in their thirties.

I know that there is absolutely nothing I can do about it (other than pretend I’m turning 28 or 29 again!) and that I will have to make my peace with it like I’ve had to do with my health but I am struggling to feel anything other than deflated.

My twenties will be gone and I will have been unable to work or sleep through the night or be financially independent or walk anywhere outside of the house without immense pain and exhaustion. I will have been unable to support my friends and family at the times they needed more than virtual moral support.

Yes I ‘should’ focus on the things I have been able to do, but allow me this time to feel a little glum. It is a big deal in my poorly little life. Allow me that. As always I am working hard to find the silver linings (and my goodness there are many!) but for now, the predominant emotion is one of sadness.

Sink or swim

It is unfathomable to me, at times, that the person who has just had to be helped out after a bath because her arms couldn’t push her own body weight up, and the person who joined in so much over the weekend with what everyone else was doing is in fact the same person; me.

It can still blow my mind; the fluctuation between utterly dreadful and just about bearable. It swings like a pendulum from ‘my good’ to ‘my awful’. There will always be a consequence for activity, for that is the very nature of the beast that is M.E.

This evening I found myself having what felt like the most gruelling bath in a long time. I wanted to be clean as I hadn’t showered in a few days and the work on our bathroom is still ongoing so I may not be able to tomorrow or the next day. I fought back tears as I tried to get up and out of the bath by myself. Waited for the water to drain. Waited longer. Waited for some energy to come from somewhere. I screwed my face up as my husband dried my hair for me, willing myself to not to cry or feel down about this situation – never wanting him to be my carer. Reminding myself that there is still immense good amongst the rubble of my previous life.

I have a husband who will turn finding my hairbrush into a ‘Crystal Maze’ type challenge. Any tears tend to turn out to be tears of laughter. He will fetch and carry for me, as my mum did before him when I lived at home. And ultimately, after 8 long years it is my own personality & perspective, who I am inside, that allows me to, each time, come back to seeing those unavoidable silver linings. I am so lucky. And I am clean!

Written 9th October 2018

Bravery

Bravery is different things to different people.

To me, bravery has come to be showing people the reality of my illness. Face to face. Not from behind a screen. Almost 8 years in and I am still learning how to do this.

For the most part when I am ‘properly ill’ I am simply too unwell to have any visitors. The stimulus of having the company of another human being is far too much on my worst days. Very few people can grasp that fact. But when you’re off work with a hangover or full blown flu, how many visitors do you want coming to sit at the end of your bed? How often do you want to drag yourself out of bed and onto the sofa to sit and listen and chat?

I have sometimes felt under pressure to let people come and see me when I simply do not feel well enough to do so.

It’s also worth noting that having visitors may be an easier option but that it is not without its own challenges. I will never be good at asking people to leave when I need to rest. I just won’t. People say “just tell me when you need me to leave” but I feel so ill all of the time that I’m not even sure I would know when that time has come until it’s too late and I’ve crashed out of the floor. People can outstay their welcome (sorry but it’s true!) and it’s not as if I can make excuses about having other plans or needing to nip out somewhere to get them to leave.

But I am trying to let people in a little more. On the poorly days when I cannot shower or brush my hair or stay out of bed all day BUT I CAN get out of bed and sit on the sofa in the company of someone close to me for 15 minutes to an hour, I am trying to do that. I am trying to let the people who want to support me, support me.

Few people can understand how hard it is to let people see the unwashed, slurred speech, sluglike shuffle version of yourself. People often say they don’t mind that version of you at all but then when they actually see it, they find it upsetting or uncomfortable and are at a loss as to how on earth to support an M.E. sufferer who cannot listen to music or watch television or read or laugh and joke. And even if THEY don’t mind, I do.

There are people though, who are willing to accept that truest version of myself. And so I am endeavouring to start making M.E. proof back up plans for the days I have meet ups with friends booked in. For example, if we have a lunch date booked in, I will now suggest that if I’m too unwell to leave the house afterall, that we have a sofa picnic instead.

It isn’t much and it will sound so much like common sense to the masses, but it is not easy this chronic illness lark. It has taken guts to get to this point even though I’ve been a full time poorly person for so long.

It all comes from the feeling of putting people out; of being a burden now. I have always worried that this new me will be far too boring for the majority of my friends; that they don’t want to have to sit quietly with me when they could be out at lunch in a restaurant. When you lose your health you lose so much more with it. My self image has become quite skewed. And that’s completely okay and understandable. But I am trying to rebuild my self-esteem. And feeling worthy of Anna-friendly activities like staying in rather than going out is a part of that.

One year on – PA Days

Related blog post >>> Worthy of Help

I’ve had my Personal Assistant for a whole year now.

I had no idea that I would qualify for the help I so badly needed to live ‘independently’. That social care referral was well worth the almost 12 month wait after that initial teary phone call asking for help. I’m still happy with just the two hours per week I get. To have anymore could well be detrimental to my health because of the sensory overload and stimulus of having someone in the house (a concept very, very few people seem to be able to grasp.)

I won’t pretend it doesn’t feel odd to have someone hoovering around you and folding your knickers while you sit here like Lady Muck but I definitely made the right choice in giving the job to this particular applicant. I just felt as comfortable as I was ever going to feel about this situation with her over the other candidates. I still pretend I’m better than I actually am with her, but she calls me out on that and it feels good to know that she knows I’m not swinging the lead.

Not once have I felt useless for not being able to do these little things for myself. Nor have I felt like a burden in the way I always did when a family member of friend came to help me in the same.

It has improved my quality of life and enabled me to prioritise my energy expenditure better. And on food prep days she lets me take all the credit for the finished product!

Same time next year?

M.E. Awareness week has been and gone and so too has my own annual fundraising and awareness-raising effort. My ‘Blue Sunday’ tea party was a success once again and each year I have to pinch myself that it is so well supported and so much money is raised. The car park was so full this year that people actually struggled to find a space!

It is quite a lot to take in for me; that so many people turn up each year in support of me and my family.

Mr Tree Surgeon and my wonderful parents. There would be no Blue Sunday without all of the work that they put into it and without all of the help they give me.

“I hold this tea party because there are Millions Missing across the world who suffer with M.E. They are forgotten about and neglected by medical professionals and society as a whole. We are mostly portrayed by the media as being simply “tired” or “lazy” and because of health condition is still so misunderstood we are branded with a stigma that can be as devastating as the illness itself.”

“By hosting this event each year it brings those people to the forefront of our minds. One day we hope that we won’t need events like this to highlight and raise awareness of M.E. But that day is not here yet.”

A full house

This year’s tea party happened to fall on what would have been Merryn Croft’s 22nd birthday. With permission from her family, Blue Sunday was dedicated to her. You may have seen Merryn’s story in the media. Her family continue to work to raise awareness of the illness that caused her death in 2017.

I may well find a willing volunteer to take over the online and virtual side of things next year. Despite checking beforehand, my mobile phone reception was just too dreadful to keep up with things online. For someone whose energy supply is so limited, it’s not the easiest juggling act to be there on the day and also present online. My days of multitasking are behind me it seems.

Blue Sunday 2018

This year I was able to bake far more than I ever have. It was an absolutely incredible feeling to be able to properly contribute and participate in the tea party myself. I have always delegated a lot of the hard work out, and Wonder Mum takes on the vast majority of the workload. But this year I baked FIVE bakes!

Admittedly the payback from the event was worse this year. Perhaps/Probably because I had done that much more in the lead up to it. But I also wasn’t doing so well health-wise anyway. A combination of factors perhaps.

So lovely to have had so much support from friends old and new

This year’s tea party was incredibly special because I got to meet/see some of my online M.E. friends and blog readers. Lucy, Katie, Vikki and Katie travelled from their homes in Barnsley, North Lincolnshire and Cambridgeshire to join me for the afternoon. Katie has hosted her own Blue Sunday tea parties over the years but this year she came to mine bringing with her an incredible ‘Blue Sunday’ free from cake. ‘Katie from North Lincs’ brought her homemade Scottish tablet and chocolate fudge with her and it was amazing!

I’m still not quite back to my ‘best’ almost a month on but as always it was all absolutely worth it. It’s my one big event of the year. And I absolutely loved it.

We have raised £1360, yet again breaking the £1000 mark. It means that we have made, on average, £1000 a year over the 6 years we’ve been doing the tea party. I am lost for words at how wonderful that is.

For the first time, I have not been able to send thank you cards out to those who donated and joined us on the day. I hope, though, that everyone knows how much their kindness and support mean to me and my family. In fact words will never be able to express how vital that support is; how it is the difference between losing all hope and not.

My JustGiving page is still live if you’d like to read my Blue Sunday story or make a donation.

So, same time next year?

It takes a village…

They say it takes a village to raise a child. Well perhaps the same is true when it comes to those who are chronically ill.

The burden of M.E. is too much for one ‘carer’ to bear.

Both the sufferer and their partner need a whole heap of support but it is perhaps the non-sufferer who people forget about – they too are carrying such a huge weight on their shoulders by being the sole giver of physical, mental and emotional support to the sufferer.

So today I have been bundled into the car and have come to my parents for a bit of respite care. The change of scene is lovely even if I feel too unwell to really be out of bed.

I am feeling quite alone though. It is so hard to know that it is your chronic illness that others need a break from.

And while those who care for us can try to share the load between them, the sufferer can get no respite or relief or time off. While the ‘carer’ undoubtedly deserves and needs that rest, I’d quite like a break too.

M.E. and me. A BBC documentary.

Following the link below will take you to the BBC I player website where you can watch a 30 minute documentary about what it is really like to live with M.E.

Talking with Mr Tree Surgeon this morning, we’ve concluded that now even my own parents get a highly filtered version of my everyday suffering. I don’t show you the worst of my illness because I think it makes me happier to do things that way; to have moments of playing along with the facade that it’s all not as bad as it really is. On Saturday night though, he had to scoop me up off the floor and fetch a sick bowl as my body seemingly started to shut down after a big day the day before. So watching the video below will give a glimpse of what goes on behind closed doors and away from Instagram filters and highly edited Facebook posts.

This next sentence is hard to write but, spurred on by Sophie’s strength in showing the world her reality in the video, and with it being M.E. Awareness week, it is perhaps a good time to come out and say how huge an impact this illness can really have.

I have had to make the decision to not have children because of the true, gruelling reality of my M.E.

Not having children is something that, I feel, goes against who I was born to be and who I imagined I would become. It is not a decision I have made lightly and it is one that can hurt my heart on some days. Yet there it is. And there are so many others out there, like me, who, for whatever reason relating to their M.E. have been made to come to the same point. I will talk about it a little more at a later date.

If you could make half an hour to watch the link there are hundreds of thousands of people like me who would be very grateful.

M.E. and me on the BBC

For those outside of the UK try YouTube

Upgrade

7 years after buying the cheapest, foldable walking stick I could find as a temporary measure until I was well again I’ve finally upgraded to a pretty one. I guess I’m in this for the long haul and there is absolutely no shame in me admitting that.

Some people think it means I don’t want to get better or that I have closed myself off to any kind of recovery. Those people aren’t my kind of people. Those people clearly do not know me and do not care enough to read the blog I set up to help them understand this chapter of my life.

Accepting this chapter of my life is the single most important thing I have ever done. Using mobility aids has been a key part of that. They can be ticket to a more independent life and allow me a taste of The Real World. Some days they are hard to embrace and some days I am simply too unwell to use them, but on other days they are the difference between leaving the house or not.

All hail my pretty new walking stick!

I need your help…

The countdown to this year’s M.E. awareness week is well and truly on.

Every year at my Blue Sunday tea party I make information leaflets to go on each table and fact cards to place around the room. This year will be no different but I’d like your help in going a little further.

Raising true and accurate awareness is why I started the tea party and every year I try to keep this up. With this in mind I’d like to have examples of the ignorance we have faced as M.E. sufferers.

So I ask you to complete this sentence:

Ignorance towards M.E. is…

Be it comments from family members questioning how one day you can do x y and z and yet the next you can do very little, medical professionals belittling your most terrifying symptoms or strangers in the street objecting to you using a Blue Disabled Badge. You can remain anonymous or I can attach your name.

Please do get in touch. Blue Sunday is for you.

‘Blue Sunday’ 2018

Please don’t hesitate to get in touch if you’d like to join us or have any questions.

I will also be sharing pictures and videos on the day onto the Facebook Event Page and on Twitter and Instagram using the hashtags #BlueSunday2018 #teapartyforME

Any donations of the price you’d expect to pay for the price of tea and cake in a cafe are very welcome and will go to The ME Association via JustGiving