Friday, 26 September 2014

Hiding by the sea

I have come to my parent's seaside house to getaway for a while as my soul is poorly. I am so stressed and in need of a break- I need to hide under a rock, or wrap myself up and spend a few days sitting on the beach and staring out at the ocean.

You would think that resting all the time at home would be relaxing, wouldn't you? But being ill all the time is very stressful. I am being forced by this illness into making all sorts of major (and in some cases permanent) decisions about my life... decisions which are forcing me to think about prognosis and speak to my doctors more than usual.

Decisions are very hard for me, it doesn't matter how big or how small the decision is, it tortures me. It's worse if there are only two options... And worse again with no certainty to help you do the right thing. When I'm here by the sea I don't need to make decisions. I don't need to do anything at all, except just be.

We have a morning system here- I text my dad (once I hear him up and about) a coded message which means 'please bring me a cup of tea and some toast'. Its not long before I hear the kettle boiling. At home I wake at 6am, here if I wake at that time I usually fall back asleep until a more reasonable time.

No one asks anything of me, any decisions that need to be made can be bounced off of my mum and dad immediately. I don't need to answer the door or speak to anyone or struggle to make lunch. Everything about me is accepted and accommodated. Just like at home with D, but here the outside world doesn't interfere.

My soul can rest. The stress is still there, but I can let the sea air nourish and heal me, and build me up for the next round of battle.

So if you need me I'll be over there, gazing at the sea, emptying my mind of thoughts and worries. You probably won't want to disturb me....

Monday, 22 September 2014

101 things.....

......that make me happy. 

1.  My family
2.  My friends
3.  My cat
4.  Other cats 
5.  Rabbits
6.  Rainbows
7.  Being snuggled up inside on a rainy day with my hubby and my cat
8.  Creating things
9.  Kindness
10. Listening to the rain
11. Listening to the ocean 
12. Chocolate!
13. Cake!
14. Getting a letter or card from a friend
15. Making others happy
16. Fresh bedlinen on the bed
17. A long, deep soak in the bath with lots of bubbles
18. Listening to a favourite song
19. Buying wool
20. Sitting in the shade on a beach
21. Seeing a fox
22. Walking in the snow
23. Walking anywhere
24. Getting a massage
25. Pottering in the garden
26. Robots
27. Feeling loved
28. Miniature versions of things 
29. Talking to children
30. Being outside
31. Buying craft books
32. Reading craft books
33. Making someone smile
34. Being by a river
35. Drinking tea
36. Hearing about random acts of kindness
37. My family being happy
38. Hearing about my friends doing well
39. When I make an improvement in my health
40. Receiving parcels in the post
41. Being near animals

Saturday, 20 September 2014

Ask me anything!

There are two types of people-  the ones who will ask me a string of questions so long that I feel like I'm on the specialist subject challenge on Mastermind, and the ones who go out of their way not to 'mention the war'. As I grow older I have learnt to accept people the way they are, and so both ways are fine with me. In general though I don't talk about it unless I'm asked, it takes up enough of my life and when I'm with my friends it's fun to act like a normal human being and have a laugh and get some respite away from it all.

By far the most common question I am asked though is "What do you DO all day?"  People are genuinely fascinated by this, which I find quite funny.  But what you must understand is that the reason that a day alone in your house seems like such a long time to fill is that you are imagining it as a well, healthy person. Things are very different for a poorly bod.

When I was first ill I felt absolutely grim all day and mostly just lay in bed, sleeping or maybe doing 5-10 minutes of knitting. Too much made me feel worse again. There was no reading, watching films etc. the days were long and unpleasant, just getting through them was the main target. The most exciting thing to happen would be getting some food brought to me or a cup of tea. But now, with successful pacing and improvement in the condition I am managing to do more with my time. The trick is to intersperse lots of rest breaks and not to plan too much... and to be creative- don't focus on the 'I can't'. If you can't manage something, see if you can adapt it a bit to suit your abilities that day. Try not to be a perfectionist (yeah right) and try not to have such high expectations of yourself (double yeah right!!)

Firstly, you'd be surprised how much you can do lying down! I am writing this blog post lying down, propped up on cushions in my bed. Most people who know me know about how my mum re-taught me to knit while I was unwell. That is all done horizontally. I couldn't manage the long needles at first whilst lying down but that didn't stop me- my dad trimmed them down for me with his saw!  It was also too cognitively challenging- I combated this by doing it in short spurts, and whenever I made myself poorly with it I got a lecture from my mum along the lines of "you've done too much knitting, you've made yourself ill!" (in a cross voice).  Gradually over time I was able to do more, and learnt to follow patterns and then to crochet. I made presents for people and that made me feel more a part of the outside world again. I won't bore you with the knitty-gritty (groan!) but you can read more  here  if you so desire.The important thing is that if I feel like it I do a little, if I don't then it waits for another day. Even a little each day soon builds up!

Snakes in a hospital bed (the sequel to 
snakes on a plane)

Bed guitar. Like air guitar, only cooler. 

(Guitar became too physical, I am trying the mandolin now instead!)

What else do I do all day? Mostly I am unable to move around too much, and now I have a bed downstairs. The plan was to go downstairs in the morning and spend the day there, as my legs and energy levels aren't up to going up and down the stairs. I planned this thinking I could take my craft projects downstairs or watch tv, going to bed when I needed to without having to tackle the stairs. In practise though, I don't make it down the stairs every day. But when I do, I have my lovely cosy bed to retire to!

I try to pad around the house to keep my legs moving a little, although it hurts if I walk too much, it hurts more if they seize up.  I now have a beautiful garden to think about and keep watered and maintained. I find that spending five minutes a time just hosing things down or pruning a plant keeps things moving forward. When it is sunny I love to lie outside in my bed in the shade, enjoying the fresh air. That is my idea of bliss!

Cold day in the garden.....

Hot day in the garden...

I write. I started my blogs-  I write a few sentences at a time and save it as a draft, adding to it as and when I can manage....I have no deadlines to meet. It helps me to feel like a part of the outside world, and may offer support or a smile to someone out there. It gives me something to do and helps me to express some of the ideas and thoughts that are jumbling around in my head. My other blog is here.I write crochet patterns, it's really challenging and each one takes weeks to complete, but it feels like a real achievement. I also write letters to my friends, this takes a long time so I usually spread it over a few days, especially as writing by hand is difficult with the muscles involved. I also write poetry but only when I feel inspired!

 Then there are puzzles- I think it's important to try to do things that work the brain in order to keep the cells working and developing. I count it as a good brain day if I can do a sudoku and get it right. Unfortunately it is rare, and it's frustrating as I used to do the fiendish ones before I was ill!  I have been gifted a collection of jigsaws, which are challenging both cognitively (the concentration makes my head hurt!) and physically (I have to sit up at a table for this and look- my eyes get very tired and sore and I can only sit upright for short times). So jigsaws are a rare challenge, although I just finished one the other day. They sit for weeks on the kitchen table... but a jigsaw in bed would be disastrous I think.

I love to read and can now read actual books again (yay!) but have to limit myself to little bits at a time. I can mostly follow what's going on but can't read anything too intellectually stimulating. If it's a bad brain day I leave reading for a time when I am a bit more switched on. Generally by the time I finish a book I would struggle to tell you the finer points of the plot, but looking on the bright side this means I can read it and enjoy it all over again in the future!  How I missed my books!

And don't forget- things take much longer when you have M.E. Showers take ages and  there is much resting needed afterwards..... getting dressed takes a while.... and when you add these to all the time needed for resting, there really isn't as much time to fill as you might think. 

SoI have given you examples of all the things I can do, but I don't do all of them every day. On poorly days I do NONE of them! But it's not all about doing, there is also being. I enjoy the little things- the sunlight through the french doors, the sound of the birds, a new flower on a plant, a visit from a friend, an unexpected card through the door.  I meditate- I love mindfulness, it makes me feel calm, peaceful and complete the way I am. It has helped me hugely in accepting my illness and my new life, which now includes lots of silence and long periods in my own company.

Today I woke up at 8am and had breakfast. I went back to sleep. I finished off this blog piece and D brought me lunch (I'm still in bed). In the afternoon I will maybe have a bath and by the time I rest it will be dinner time... I think I'll manage to sit at the table tonight (on bad days all my meals are in bed).  Tonight I'll lie on the couch and we might watch a film, with me knitting away while I watch. A day in the life of me. Despite the pain and illness it's not a bad wee life.

And no matter when it happens, getting a cup of tea will always be exciting in my book.

Wednesday, 17 September 2014

Surprise surprise!

People will surprise you. And as with all surprises, some will be pleasant and some... well.... not so much.

Society is not geared up for the kind of chronic illness that lasts indefinitely and has no certain path of recovery. People are more familiar with a different pattern- someone gets ill, then that same someone either recovers, quickly or slowly but with a definite upward trend, or is told they have a terminal illness.  This kind of certainty is impossible with M.E. It might get better, it might get worse or it might fluctuate wildly within the month, the week or even the day. And it will probably drag on for years. This can be difficult for others to understand and cope with. 

When you are first ill  people come to visit, send cards, offer to do shopping, make a special effort with social arrangements (such as arranging to visit you instead of meeting in town for a cuppa) and generally offer support. But you carry on needing this kind of support long after most people would have recovered. 

The hardest thing of all is to ask for this support, or accept it when it is offered. I am lucky enough to have had more good surprises than bad.  I have a loving and understanding family, a solid network of friends and a periphery of more distant, but hugely important people cheering me on. Friends of my parents, members of my orchestra, fellow crafters. A wonderful neighbour I can rely on to help me out or just share a cuppa and a laugh with. A network of online friends whom I can discuss the highs and lows of this illness with. I have been touched by the amount of caring people cheering me on. 

But still the thought of those who have let me down niggles at the back of my mind. I try to excuse them- they don't understand and my expectations of people have always been too high. In the end perhaps we were not friends in the first place as I had thought, but just acquaintances. I am glad to have found that out. And anyway,  I try to dwell on the good surprises, the people who have been there helping me through, because they're the ones that matter. 

I may not be able to pay back your help just now, but I will never forget it. I can't go out partying like I used to, but you bringing the party (albeit a quiet, M.E friendly one) to me means so much. A cuppa, a chat, a laugh, a card through the door, even a text means the world to me. It shows me I am not gone from this world. 

Friendships must change, but they can still be rewarding and fulfilling on both sides. Thank you for making the change. 

And for those that have let me down- well, it's never too late.

Sunday, 14 September 2014

There are many types of superhero

You are a multitasking superhero, highly trained in the art of doing a hundred things at once. You thrive on adrenaline, zooming from one place to the next, late for everything and mind already on the next task. You have a busy job that you love, you give it everything and leave from work later and later each day in order to give it your very best. You rush home to make the dinner every day, eating on the go sometimes so as not to be late for your orchestra, netball game or meeting your friends for a drink. Somehow, amongst all this you manage to keep the house intact, have a conversation with your husband and even give the cat a quick pet on the way out the door.

One day this all stops. You cannot even get out of bed to go to the loo, never mind going to work. You are no longer a superhero. Or are you?

Being sick long term is bloomin hard work. You can't clock ofF at the end of the day, the nights are often harder than the days.  You battle daily symptoms and you are never sure what to expect each day. It could be heart problems and a temperature one day with swollen glands and flu-like symptoms, the next day might be pain, stomach and bladder problems and headaches. The next day could be a migraine, shortness of breath and chest pain, then the next day might be extreme sensitivity to light, palpitations, pain, seizures and blackouts. If you're like many M.E sufferers, you might have all of these symptoms at the same time.

At my worst I couldn't sit up in bed. I couldn't talk, chew, go to the toilet by myself, have a shower or bath (my one great love... mmmmm.... baths...), brush my hair or get dressed. I couldn't watch telly (too stimulating), read a book or even do a simple puzzle. I just had to lie there. So you can imagine how appreciative you become of the 'little things'. Making a slice of toast and cup of tea, having a shower by yourself (just unfortunate that you forgot to take your pyjamas off, such was the concentration required to get in and turn the water on),  blow drying your hair, phoning a friend.

This is the real superhero stuff right here.

Then there is the admin. Sick notes from the doctor, prescriptions, appointments, different drugs and side effects, coping with disbelief,  attending work absence meetings. Managing the GP, paperwork for blue badge, benefits, assessments, applications, sorting out mobility aids, household aids, arranging carers. Each of these things is a mountain to climb with the brain fog and fatigue of M.E.

And the emotions.... The feeling of loss, grief, mourning for your old life.  Loss of 'friends' who don't or won't understand. Boredom, frustration, constant feeling of guilt about inconveniencing everyone who's caring for you or cancelling arrangements at the last minute, the worry and fear about the future. Coping with the lack of medical research and disbelief from the people who are supposed to help you.

So-  flying? Fighting baddies? Spidey senses? Nah. If you can manage to survive as an M.E sufferer for even one day, you are a superhero. Just remember not to wear your pyjamas in the shower.

Live simply

Surely there is no bright side to having your life destroyed by M.E? 

Yesterday on FB a mindfulness friend of mine posted this picture: 

Before I was ill I did none of these things. And yes, it is truly awful feeling this level of rubbishness day after day. But... I cannot help but see the positives too. This quote couold be describing me on certain days, with nowhere to be, no pressures or responsibilities and every opportunity to just simply be. 

On certain days, when my mind feels good, and I have meditated and enjoyed the still, when I have things to do such as some crafting or an old film, things could be nice. I mostly have no-one to share this with though as most of society is out working, but sometimes, just sometimes, it feels pretty good to have nowhere to be, nothing to do and time just to be.