Sunday, 30 March 2014

The External Effects

This isn't a pity party or my attempt at fishing for compliments. I'd hope by now you'd know that's not my way. This is merely the truth as I see it today. 

The external impact of chronic illness is something I had not anticipated or even considered. In many ways I am more comfortable in my own skin now, despite my ill health and all the baggage that comes with it. But in other ways I am deeply unhappy and ill-at-ease and sinking into despair. I've already had posts on this topic with Looking gooood and Appearances but here is the other side for the days when those silver linings are harder to see. 

When you have the flu or a sickness bug you can look pale and drawn, greenish even, and, well, ill. When you have a chronic illness you can look like this constantly. (I don't get irritated when people tell me I don't look sick. I take it as a compliment!) It doesn't do much for your self esteem.

Sometimes I just don't recognise (or perhaps don't want to recognise) the person I see in the mirror. I feel hideous. 

I am embarrassed by this beast of a reflection. This is not what I want to look like. I don't believe this is who I truly am; that this is what I truly look like. Sometimes it makes me cry. Anna Jones is the athletic looking one, right? The university years took their toll but not to this extent. 

I am ashamed and repulsed, choosing baggy clothes not just for their comfort but because they hide the fact that I have...grown. Outwards. I am 5'7 and have always felt 'big' next to many of my friends but now I find myself feeling collosial even in my own company. Even infront of family members I prefer to hide myself in any way I can. 

I am disappointed in myself for not realising what I'd got until it was gone.

Now I often have a swollen nose from some reaction or other. And pasty skin that is a different colour from the rest of my body. My skin is covered in spots, and not just on my face. Then there's the blotchy patches of skin with areas of redness that even ice packs cannot cool. My nails do not grow as they should or once did. 

My hair is falling out again. My eyebrows too this time. My body prioritising other functions over hair growth apparently. I have no hairstyle. Just a cropped cut as short as my mum would go. She cuts it for me when it becomes to 'long' for me to wash myself. Headscarves and hats are multipurpose; they hide greasiness and the fact that I cannot brush my hair. There is no energy for hair removal. I feel repulsive and most unladylike. Leg hair growth is more important than head hair growth it seems. Typical.

I have no spare energy for beautification. Before now I have used my precious energy on applying makeup for a trip out of the house, and then not had enough energy left to actually go on the trip. So now, mostly, I have to go out in public or to see friends with no mask at all; nothing to hide behind. I no longer manage to wear contact lenses, another change from the Old Anna. 

The weight gain is getting to me. I miss my flat stomach and athletic figure. I miss my tanned long legs now ruined by cellulite and stretch marks. Above my knees is now an absolute horror show. I can no longer see my hip bones or jaw line. Or my collar bone for that matter. My beautiful rings no longer fit on my fingers. I have a gut now and gravity makes it heavy and uncomfortable if truth be told. The skin is tight and stretched and the weight of my stomach, and lack of muscle tone, makes it hang over my trousers. There are rolls of fat on my back. I feel repulsive. Absolutely disgusting. Any muscle or definition I once had has long gone. The lack of exercise and the inability to even walk some days has been most unkind. I can no longer sit in the bath because I do not fit. Yes, really. I've become too wide. Just as well I'm more of a shower person... When I started this 'journey' I was a size 12-14, or a 10 on top if I was lucky. I now cannot fit into a pair of size 18 shorts. My thighs are probably bigger than some peoples' waists. 

I'm not saying I AM repulsive just that that's how I FEEL. 

I am knock kneed and now it is even more noticeable with my thighs being so large that they look like one lump of flesh rather than two. No thigh gap for me. I can joke about it but deep down I am hurting about the state of myself. I despise it all.

With so few pleasures in life left I refuse to give up my beloved chocolate completely. In truth I don't have much of an appetite for anything because of the nausea and I don't eat much at all. If I did I dread to think what size and shape I'd be by now. Fruit and vegetables are leaving me feeling far worse for eating them than I feel without them. So what is one meant to do? Rhetorical question. 

I hate my apparent shallowness and the fact that I cannot embrace this side of chronic illness.

My heart goes out to anyone feeling the same. 

Wednesday, 19 March 2014

The kindness of strangers

There are some people who have the power to outweigh all of the evil and injustice in the world. Well, in my world anyway. 

These people make the sun shine on the darkest and gloomiest of days. They bring a sense of calm and peace to my heart. They leave me lost for words and in awe of their kindness. 

I am finding that the people who have known hard times themselves have the kindest souls. It seems unfair that they have had their own struggles, but perhaps those struggles have shaped them into the wonderful people that they are. I hope so, because I hope that I'll come out of the other side of illness and be as thoughtful and selfless as they seem to be. I believe you have to become selfish to survive chronic illness yet these people have found the balance.

I haven't met some of these people and yet they have touched my life in a way that makes me wonder if my life was perhaps a little empty before it was interrupted by illness. 

They are the people who run online support groups, and the people who notice when I'm 'quiet' on twitter and wonder if I'm okay. They are the people who send text messages with the simple words 'I hope today is okay.' They are the ones who send comments about my blog. They are the people who use their precious energy to write poems and make bracelets and handmade trinkets and send chocolate supplies to others. They are the people who put aside their own suffering to lessen the suffering of others. These people are inspiring and uplifting and restore my faith in humankind.

They are the people that shine the brightest. Despite the bleak fog of illness their light has not been diminished.  

These people are gold. These people are you. 

Monday, 10 March 2014

Outfit of the Day spoonie-style

There are so many bloggers out there who now make their living by telling people what it is that they're wearing. I won't lie, I don't quite get it. I mean good on them for seizing the opportunity but, personally, I'm more than capable of choosing clothes from my wardrobe without needing to search for inspiration online. Millions and millions of people are using the Outfit of the Day hashtag (#ootd) online. I just don't get it. I suppose it's like the selfie phenomenon but you'll know by now that I'm no stranger to that. Sorry! Aren't we a self obsessed lot?! 

But if outfits of the day or ootd is what the public wants then that is what the public shall get, spoonie-style. (If you're unsure about what as 'spoonie' is read The Spoon Theory.)

So today...
Today's OOTD, was also yesterday's OOTD. And the day before that's...
My scruffy-looking t-shirt is from New Look. It was clean on yesterday. It's lightweight and too big so as near to perfect as I can get it. Body doesn't get on well with certain fabrics anymore, even 100% cotton doesn't seem to make it happy. According to the label, this is 65% polyester 35% cotton. 

Today's trousers are also yesterday's trousers, and the day before that's... Infact they're not trousers at all. They're pyjamas and I've been wearing them day and night. And, as we're now firm friends, I won't lie to you. My pants aren't just today's either... 

Recently I discovered headscarves. They're cooler than my usual hats and still help ease the feeling I get that can only be likened to being whacked on the back of the head with a shovel. Today's scarf is from Fat Face and is bright and colourful enough to not blend in completely with my pale face. They also hide greasy, unwashed, tufty hair. A tip from me to you.

This fetching, grey jumper is right up there with my favourite navy huge one that I'm sure you'll have seen in photos before now. It was from H&M a while ago and, like most of my clothes now, was bought two sizes too big for extra comfort. The baggier the jumper, the easier it is for me, or someone else, to get it off when my temperature rockets within a matter of seconds. 

Underwear. Well, with the chest pain underwired bras aren't really an option anymore. I'm practically an ironing board in that department anyway so no matter. And I'm sure the ladies will agree with me that bras are saved for the days when you're reentering The Real World, or for when you have visitors, if they're lucky! I've gone old school and invested in some crop top type monstrosities though. M&S underwear all the way; ginormous knickers and all!  

Snail socks are today's choice. 

What could be more appropriate? Tortoise? I have a pair of them too. I am yet to find a pair of sloth socks. If you ever see any please let me know! 

Zero jewellery today, not even stud earrings as sometimes Body (or rather my immune system) decides it doesn't like earrings anymore. So demanding!

And while we're at it, there is no beauty regime. I wash my face with a wet wipe if I don't have enough energy to wash it with water. There's never any moisturiser or day cream. That requires energy I just don't have. I do still use deodorant though, mostly. 

Add caption

So the spoonie 'O.O.T.D.' isn't quite as glamorous as the usual blog posts you see on the topic, and after the revelation about my dirty underwear I can't image they'll be requests for more posts like this. 

When I'm well enough I swap pyjamas for comfortable clothes. But there's been more than a few pyjama days so far this year. And I'm sure I would 'feel better' if I was clean but next time you change from your clothes to your pyjamas, or vice versa, stop to think about how much your body is actually doing; how much energy it is actually using. The energy supply of a spoonie is dramatically reduced. We save our energy for chewing, swallowing, circulating blood, surviving...

Thursday, 6 March 2014

M.E. and Depression - Guest blogger

Like Miranda, Elizabeth responded to my appeal for guest bloggers who were willing to share their experience of Depression and M.E. Thank you to Elizabeth for doing so and for doing it so well. 

‘M.E. and Depression’ by a patient and counsellor.

As ME is not just being tired, depression is not just sadness - and understanding their similarities and differences can help us to see how both can be misunderstoodME is a physical illness that, like any chronic condition, can impact on mental health; depression is a mental health problem that canmanifest itself in physical symptoms. In the west we tend to treat mental and physical health as distinct areas, but in reality each affects the other and they can’t easily be separated. Look at the symptoms that can be experienced in both ME and depression: fatigue, concentration problems, reduced sex drive, sleep problems, appetite problems, guilt, agitation, moving/speaking more slowly, irritability, indecisiveness, loss of confidence, anxiety and low mood.
ME and depression both lack one agreed on cause (or treatment); both are experienced across a wide spectrum from mild to severely disabling; and medical training (and so accurate diagnosis) can be limited in each. As a counsellor have seen people referred with a diagnosis of depression that was wrong in a key area – they didn’t lack the motivation or enjoyment of activities that is a key characteristic of depression, but rather the physical ability to do those activitiesaccompanied byhuge frustration.
I have also worked with people with ME who have become depressed because they are ill, characterised by hopelessness about the future and often a sense of failure. Living with ME therestrictions on your life; being misunderstood; anger and grief at what has been lostisolation;uncertainty; the missing out can all mean great distress - it would be strange if this didn’t impact on your mental state. How do you know if you are becoming depressed? While it is natural to feel sad sometimes, beginning to feel separate from the world, an absence of usual feelings for loved ones, not being interested in personal care and losing motivation - if you experience these and maybe have thoughts of harming yourself it is time to seek help.
How to minimize the risk of depression in ME? People with ME often don’t want to talk about it as they assume others are as sick of it as they are, but finding a place you can express the full range of emotions and feel understood iextremely helpful protective factor - whether this  a friend, a support group, online forums or a counsellor. If we always answer ‘I’m fine’ when we are far from it those feelings can be turned inwards. Counselling, mindfulness and acceptance are very helpful tools whenliving with chronic health problems - learning to live from the starting point of what you can do helpsas fighting and denial don’t change ME, and can make it worse.
So, the key difference between ME and depression is between not being able to do something without great physical impact and not wanting to do it. If both are starting to be the case for you seek help.
For more on living well with chronic health problems see @lizahpool &