Category: personal story / life experiences

Give someone a #BagOfLife

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I just supported Give someone a #BagOfLife on @ThunderclapIt // @ColostomyAssoc As an Ileostomy bag wearer with a stoma for life and medical complications dispute bags and medical care I can’t imagine how awful using a tin can or bandages must be though reality for many.  Necessity not a luxury. Please, please join me in […]

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In recent weeks, I….

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Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
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Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

All about my ‘bestie’!

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I first met Laura in secondary school. I don’t know who first started talking to who. I’m going to ask her, because I am curious now! I remember our ‘regi’ class [form group] lined up at the classroom next to hers.

Even though we don’t often talk or text (though we are at the moment) I know we think of and pray for each other, and she’d be on the end of the phone if I needed her and vice-versa..

Whatever I write here will not do her justice, at all, but here are my three favourite qualities in Laura:

Her amazing loyalty is what I think of first… Though I was a Christian at this point, and a baptised one at that I could be quite nasty sometimes and stir things between people… cause trouble basically, though I have no idea why now, and wish I had befriended those I made trouble for instead. Anyway, Laura stood by me through all of that. I moved about 90 minutes drive away from the town I’d lived in when I met her, and Laura is the only one who is close now despite distance between us.

Laura is one of the kindest, most cheerful people I know. She works with disabled kids in a unit attached to our old school. Not the one where we met because that’s no longer there. The new build is called something different but some of the same staff were still there the last time we talked about school and Laura’s work. I have no doubt she is amazing at what she does, with her kind and caring attitude, and a smile on her face. I bet she makes the kids she works with feel good about themselves too. I remember Laura accompanying her brother to their local Church Youth Group, as he couldn’t go without someone with him. She helps her Mum out a lot and I remember her helping with the kids too. I am sure there are loads of other examples, as Laura is always ready and willing to help someone in need, but I don’t know about it because she doesn’t shout about it.

I don’t ever remember Laura not being cheerful and having a smile on her face. I don’t ever remember her feeling down either. She’ll cheer me up when I need it, often with a funny story about something one of the kids did, as her Mum is a child minder. Whatever life throws at her, she seems to just get on with it, which I really admire. I have no doubt there will have been times she’s cried, but I don’t know about them.

Guess I would if I know about those times if I lived nearer. I really wish I did. We don’t see each other often as there are hundreds of miles between us now, and neither of us can drive… yet! Laura is learning, and getting there by the sound of it. Will give her a lot more freedom, though it will be a long time before I ask her to drive to Leeds! I can’t travel on my own these days and it’s still not totally sorted out yet, but I asked (told) her to come down to Leeds with her sister this summer. Really looking forward to seeing them both and catching up. Creating mischief is more like it. More ankle bashing, Laura?!

 

“God made us best friends because our mums couldn’t handle us as sisters” (author unknown)

 

 

 

Less Super Stylish, More Carefully Selected, and Comfortably Attired….

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Daily Prompt from 4th October:

How important are clothes to you? Describe your style, if you have one, and tell us how appearance impacts how you feel about yourself.

Goodness, this is such a big question for me! In terms of personal style, other people, especially friends, often tell me they like what I’ve chosen to wear that day, or ask me where I buy my clothes. I’ve come to prefer buying most of my clothes from George at Asda because if I choose what I buy carefully, I can get really lovely things for a reasonably friendly price. There is a smallish local store near where I live, which saves a lot of energy I don’t have, and I can try things on at home. Clothes shopping can take me hours, by the time a carer and I get into Leeds, find things suitable for me, try things on, get transport home… Everything takes longer from a wheelchair, at least in my case, and all the effort I expend often ramps up my pain levels considerably (pun intended!) I’ve developed my own personal style over the last couple of years, which makes it easier to choose what to buy, but much harder to find things, as I have developed a list of criteria when buying clothes. If I do not stick to these, it just causes problems. It’s easy to see why when you see how long my list of criteria is!!

Tops: be it a t-shirt, cardigan, or sweater, they must be longer, otherwise they ride up my back when I sit in my wheelchair, which is unsightly for others, and uncomfortable for me. It also causes pain and discomfort in hands, fingers and arms if I have to attempt to sort something like that all day long. If a top is longer, it hopefully covers the waistband of whichever trousers I am wearing, which makes living with the bag more discreet, but also means I cannot tell as easily how full the ileostomy bag is. T-shirts must be baggier to fit well, given I am quite overweight at the moment, and because they look so much better than tighter things when I am sat. Tops with too much stretch can be a problems for this reason but sometimes if I buy them a size or two these can fit lovely and still look much more ladylike than something with no shape

Trousers: my criteria for trouser-buying and the reasons behind them could fill a separate post easily. Preferably, no buttons as I find them so difficult, and painful to use. I’ve had many an accident because I could not manage to work with the trousers in time to make the loo. Trousers with buttons mean there is a lot more pressure on the bag because of where it sits on my tummy, meaning it is so much more likely to burst. For this reason, I really need to find trousers with as much stretch as possible as this puts less pressure on the bag, and is much more comfortable for sitting for long periods of time in my wheelchair.

This means generally only one style of trouser is suitable for me – jogging bottoms. An anathema to style columns in women’s magazines’’’’, as they are oh so fashionable, ubiquitous, and associated with overweight people in general I certainly fall into this particular category. I try to find jogging bottoms with a smooth waistband, as these are less likely to make an impression in the tape surrounding the bag, which is actually very uncomfortable. I have to spend so much time in my wheelchair that weight has gathered around my middle, meaning it is very difficult to find trousers which fit at all. When I can find them, I love when jogging bottoms look smarter like ordinary black trousers for example, like I would wear on a Sunday or out for a meal with friends, or on a date.

If I can find trousers which meet my long list, they are usually just that very thing – too long! They do need to be slightly longer as they would look odd otherwise when I am sat in my chair, However too long and I fall over the trouser legs when going to the bathroom, not just inconvenient, but dangerous given my distinct lack of balance, or co-ordination! Leggings can also be a good option in terms of fit, not riding down, (a big problem because of my weight, and wheelchair using) and are even better if a looser fit and thicker material, which can make them a brilliant option for wearing to weddings or other special occasions with a smart top.

Jackets have to fit a lot of the same criteria as tops, funnily enough, though too long and I end up sat on them which pulls on the material making then very uncomfortable. I have to be careful they are not too tight around the shoulders either, as it can make my shoulders uncomfortable for driving and look unsightly if too tight. Depending on the style, it is very difficult to find jackets that fit because of my weight. Anything with long sleeved. Sleeves which are shorter or can be turned up are much less likely to get in my way when I am driving my wheelchair, much safer and easier to see what I am doing.

Dresses: I cannot ever remember owning a dress in my teens, other than a bridesmaid’s dress, as I disliked them immensely while I was still on my feet… I hated that other people could see my misshapen knees, and was SO self-conscious that other people could see the unconventional way I walked, however, since my last major operation five years ago, dresses have become something of a style savior for me. They need to be longer-line, and stretchy so as not to make my shape unsightly when sat down, and to fit over my stomach without overemphasizing my weight. They also tend to put much less pressure on my ileostomy bag – an absolute bonus. In recent months, thanks to a dear friend, I have discovered White Stuff, a great go to for my occasion wear, precisely because they sell a lot of their clothes in stretchier material, and their clothes tend to be a generous, feminine fit, and pretty to boot, even if on the pricey side, though the last time I bought from them I put birthday money and vouchers together to be able to buy it.

Shoes are another minefield, and have been since I can remember, as they often are for any of my friends with a physical disability. Again, as with trousers my criteria for buying shoes could fill a separate post. What I needed when on my feet is very different now I am in a wheelchair full time. My legs and feet are very swollen because of side-effects of medication and being sat all the time. I find it tough, if not impossible to take my own shoes off, so really need to wait for help to do this, or leaning over my stomach to get to my feet can make the bag on my stomach burst (nice!) I most often wear slipper socks, or Piedero boots with a velcro fastening, as these can often be all that fits.

I found this upsetting for a while, as I have always loved my shoes, and own many more pairs than I can wear, just because I don’t always have things on which need a smart outfit. Many of these shoes no longer fit. I have been known to make completely impractical decisions on occasion when buying shoes, just because I love them. The shoes I recently wore to a dear friend’s wedding were a striking royal blue colour with a suede effect and a small thin heel. My balance can be atrocious even in flat shoes, so I can well remember my Mum’s reaction when she saw with shoes I was planning to wear. This is a common problem for women with a mobility problem – the shoes we need to wear can be completely unsuitable for special occasions, though special occasion shoes can be completely unsuitable. This has caused more than one dilemma over the years!

Confidence enhancing clothes are a combination of all the above, making me feel more comfortable, and less aware of bag, and make it less likely the bag will burst. Then, this makes me relax much more, making me much more confident. Not always fashionable, but hopefully usually stylish. Recently, I went to dear friend’s wedding, and the next day, to the church my parents now attend in Lincolnshire. I chose what to wear very carefully indeed. Thankfully this paid off as there were no issues, making a successful weekend for me!

(tell me why) I don’t like Mondays…

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As it is Monday today, I have been acutely aware a blog post was due, having been asleep and unable to fuction for the majority of Saturday, and out for the majority of Sunday, I have had no chance to schedule a post ahead of time. Yesterday, I had to get the minibus to church with my little wheelchair as the big chair is awaiting a repair and was too unreliable to drive, and could have halted at any given minute. Having the little chair meant being able to go from home to minibus to church, to my friends car, and into their house, and vice versa later on. Hard work for me, but means I can still visit my friends houses occasionally, giving me a bit of a life, meaning I am not completely housebound. Of course, relying of this kind of assistance just to cross the threshold from my flat to the big bad outdoors means I am still housebound for the majority of the time. I did have a good day with my friends, who were not in the least bit bothered that I napped in my little chair for the best part of an hour between 5 and 6 pm. I am so thankful for that, as it meant I did not have to rush away as soon as I had eaten, but I could spend more time with them once I awoke. My friend’s daughter has learnt how to take my arm when i need to borrow her for a few steps, and also now knows how to fold my chair, I think this is fantastic because she has learned these things young, and can help others too. Useful in a church such as ours where the split between able-bodied and ill or disabled is a least 60-40, far higher than in society at large.

Fast forward a few hours, and I awoke exhausted from yesterdays exertion. I awoke when MainCarer pressed entry buzzer but fell asleep between letting him into my flat and him finishing sorting things in the other room. Bummer. I jumped awake when he came through, spazzing from head to toe. I struggled through strip wash and getting dressed, and managed most of my bacon sandwich, and my tablets. After a little rest, I think I dozed again, until I realised my stoma bag had split everywhere, barely an hour after main carer had left. I dithered, wondering briefly if I should attempt to change it before common sense prevailed. I decided the most sensible thing was to wait for the nurse or an assistant, whoever was due to do that morning’s treatment. Before long, I heard the entry buzzer being pressed again about 9am. Help had arrived, and by 9.30am, had left. Dressed in clean underwear and jogging bottoms, I slowly and painfully clicked my way through to the living room with my Zimmer frame to start my list of emails and calls, much like some of you would do this as part of your job.

It wasn’t long before I cried out to the Lord ot help and strengthen me, as I felt completely unable to function. Just at the right moment, I saw the following Spurgeon quote which ‘Flowing Faith’ posted on Facebook:

Let this one great, gracious, glorious fact lie in your spirit until it permeates all your thoughts and makes you rejoice even though you are without strength. Rejoice that the Lord Jesus has become your strength and your song – He has become your salvation.
~ Spurgeon

This became my morning’s heartfelt plea, and prayer. Two hours later, I am much more exhausted than before, with all 5 items on the list attempted, two voice mails left, one person having called back and another two still to do so, with two emails still to have answers to. I don’t feel as though the morning has been a success, as most of the list is still to be completed by others. My head is splitting and my heart heavy, and I feel slightly nauseous. I desperately need to sleep, but would likely sleep through and miss any calls, should they be returned while I nap.

In the middle of my business, and busy-ness, a friend text me to say they were on the way to a holiday in a sea-side town in the next region to the one in which I now live, with who else by my former ‘someone special’ as they felt I had a right to know. I cannot begin to describe my heartache, as we no longer speak; it being just too painful. They then proceeded to tell me they had wanted to visit while they were so near, but my ex refused. Expected but still very difficult to deal with, especially as ex had insisted next holiday would be abroad, and they could not come and see me, and were unlikely to be passing and see me that way… and then I find out they are visiting the next region. I hardly know how to feel, except I think this is adding to the nausea.

Doing my ‘jobs’ was only a partial distraction. The friend I who hosted me and others yesterday remarked recently said she understood why I consider my health to be job, partly because the phone calls and emails I do are also part of what she does at work, and partly because of how much time everything takes and the extra effort required due to my illness and disability. About 10.45 – 11 am, my temperature began to rise, and I started to sweat. I think this is from the effort of everything. Now I am sat, I have cooled a little, though I am still desperate to sleep.

The receptionist who answered my first call claimed to ‘understand’ that my chair is out of action, but was unable to process paperwork or make repair appointments any faster. This may well be the case, but please, please, do not claim to understand my situation. I am physically, mentally and emotionally spent and it is not yet lunchtime. I keep jolting awake every few minutes, and attempt to type a few more letters before I doze off again.

I have written this to try to help friends, family, and those who follow my posts to realise what life can be like for someone like me. Of course, the reality will be slightly different for each of us unable to work, but there will still be plenty similarities, like having very few spoons to begin with, the effort and time everything takes and the effort required to do it.

Small spoon
Small spoon (Photo credit: Wikipedia)

Main carer will arrive soon, meaning I can hopefully sleep while he does some jobs and waits for my phone to ring. I cannot wait!

What about my future?

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Tuesday’s daily prompt was one of the easiest I’ve ever answered. It was as follows:

Write a six-word story about what you think the future holds for you, and then expand on it in a post:

Only God knows what future holds

I find this an enormous comfort. I don’t have to strive anymore, because God’s got it sorted. I have no idea what the future holds, but He does… and he know’s what’s best.

That’s the simple truth. If I were to have a childlike faith, as I should, I should accept this and live by it without wavering. However, I am not as faithful to my father God as he is to me…! This is something I am learning over time, as I make mistakes, or try to have things my way. Were I completely disability and illness free, maybe I would have a husband and children of my own by now… or maybe not! Only God knows things like that, or whether I will ever be stable enough, and have enough support to have a job, and a career, or a husband! I am learning to develop a heart of gratitude for the many, many things I do have, from food, running water, flushing toilet and a roof over my head, a little money in the bank and money in my purse. This makes me in the richest percentage of people in the world. I think sometimes the disability lobby forget these things, though who knows what will continue to unfold with the welfare ‘reforms’. Things may well be completely different in a couple of years… or maybe not. I guess this is part of the reason it is important to trust God for the future. However, it is just as important to trust Him in the present, as I am to live for God now.

My life now also has consequences for the future; my eternal future. On Monday, I published a post about Invisible Illness Awareness week, and the scripture I quoted as helping me through the tough times is also relevant here:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

Scriptures like this help me keep going through the tough times. I have to admit, I am not superhuman, there are days I struggle so much with physical, emotional or spiritual pain. I am finding things tough at the moment but it helps to know that this isn’t the end though. What I do now will have a bearing on then. Just recently, the last 6 months or so at least, I didn’t see things as clearly as I do now. When things are bad I try to think of others more disabled than me or who have a particular need and pray for them, or to read a devotional by Joni Earekson Tada or a Psalm from my bible. It may be a song, or a prayer on Christian radio. It’s what Tanya Marlow called ‘the truth that comes in sideways’. (I highly recommend her post, which you can read here) I’m off to find some of that now to help me get back to sleep. I got a few hours rest before midnight but have been awake for at least 3 hours now!

p.s. I can’t remember where I read or heard this, but someone once said life is like a tapestry. We see only the picture on the front, but behind the scenes, at the back of the tapestry is the One who holds all the threads and can see the to bigger picture. One day, I will see the bigger picture too, but for now, I have to live in the present.

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Invisible Illness Awareness Week 2013

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Hi guys! The last time I posted was the 2nd of this month, and today is now the 9th. Put it like that, it doesn’t sound so much of a gap. However, before and after that post, I have been feeling unwell. It was an odd combination of stomach cramp, which I already take medicine for,  and a bad cough that my GP gave me antibiotics for as a precaution, as the cough had lingered for weeks. Thankfully, the antibiotics have made a difference, and the stomach cramp has subsided. I am still very tired, and in a vicious cycle of lots of sleep to no sleep, (or very little) and then too much sleep again. I know from experience this will sort itself out to an extent, but I am usually shattered anyway. Much of what I go through, the carers see quite a bit of it, especially the main carer. My family knows a lot, but doesn’t generally see me day to day. Some close friends know a lot, others nothing.

The only One who knows everything, is of course, Almighty God. I was reminded of this very truth this week as I was reading Day Two of Stacy Williams 21 Days to Finding Purpose in Pain, which I won a copy of after explaining some of my experiences with chronic pain underneath a guest post on pain written by Stacy herself on my friend Wendy’s website, ilovedevotionals.com. One of the verses for that day was from Genesis 16:13:

“She gave this name to the Lord who spoke to her: ‘You are the God who sees me,’ for she said, ‘I have now seen the One who sees me.’” Genesis 16:13

I got such comfort from the thought that God sees me and knows absolutely everything I am going through. That same day I read a devotional from Joni Earekson Tada talking about how parts of the Bible, especially Leviticus concentrates on the details of how to honour God, live out their faith, and keep their homes, and food hygienic and safe as possible. All the littler things, and yet God was in it all, as he is in all the smaller details of my life too. He sees the pain; physical, emotional and spiritual. He sees the day to day struggles, and also the small triumphs. For all these things, I am extremely thankful.

It was thanks to reading ‘Chronic Rants’ post on Invisible Illness Week that I first knew about it. I read her excellent post on 30 things to know about her illness, and decided to answer them myself. Parts of my illness are physical obviously, such as Cerebral Palsy (CP) and I use an electric wheelchair to get around. If you would like to know more about CP, I wrote a post for America’s National CP Awareness Week earlier this year, which you can read here. So, Invisible Illness. Why do I feel so compelled to write about something so private? Well. if you don’t know, you can’t understand, and it makes it harder for you to be there for other who have hidden things wrong with their bodies too.

30 things about my invisible illness you may not know (to have a go, the link is here)

1. The illness I live with is: Chron’s Disease, bowel resection, and chronic nerve, muscle and joint pain from walking and being semi-active for years. Oh added to that, constant fatigue from medication, sleep problems and so on. I already had Cerebral Palsy, from birth.
2. I was diagnosed with it in the year: 2005, last major op was 2008, and pain has become chronic in the last few years, steadily increasing year on year
3. But I had symptoms since: 2002 (I was 19), though lived with first, most major bowel resection since I was a few months old.
4. The biggest adjustment I’ve had to make is: There are two actually; being a full time electric wheelchair user, and the consequences of that, and secondly having carers in my home two to three times a day to help me.
5. Most people assume: my Cerebral Palsy is my biggest problem.
6. The hardest part about mornings are: how long it can take to wake up. I feel so ill too, never feel rested, and often have a headache and am in pain, especially back pain.
7. My favorite medical TV show is: 24 hours in A and E.
8. A gadget I couldn’t live without is: not really a gadget, but couldn’t live without appliance on my stomach… and my wheelchair.
9. The hardest part about nights are: not sleeping, or waking up in the night in pain
10. Each day I take __ pills & vitamins. (No comments, please) about 10 morning, 4 or 5 both afternoon and teatime and about 8 at night, plus multi vitamin.

11. Regarding alternative treatments I: think sometimes they are useful. Massage can really help, as has acupuncture, though in the case of both treatments I need someone who knows what they are doing so as not to cos me further harm or pain.

12. If I had to choose between an invisible illness or visible I would choose: I already have both.
13. Regarding working and career: I desperately wish I had both. What career? My job is my health.
14. People would be surprised to know: I once crossed London on my own when I really, really wanted to visit a charity I care deeply about.
15. The hardest thing to accept about my new reality has been: how limited my life is.
16. Something I never thought I could do with my illness that I did was: see number 14.
17. The commercials about my illness: there are no commercials about them – but adverts for painkillers annoy me – if only it was that simple. I take at least 3 different pain killers and still live in chronic pain, constantly.
18. Something I really miss doing since I was diagnosed is: well, have always been ‘disabled’ but miss being able to walk around, however wonky that looked.
19. It was really hard to have to give up: walking
20. A new hobby I have taken up since my diagnosis is: card making, and baking.
21. If I could have one day of feeling normal again I would: Ooh, I’ve never had a ‘normal’ day. I would travel to see someone I still care deeply about.
22. My illness has taught me: to begin to learn how to ‘be still’.
23. Want to know a secret? One thing people say that gets under my skin is: “what do you do all day”.
24. But I love it when people: come sit with me
25. My favorite motto, scripture, quote that gets me through tough times is:

 Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

26. When someone is diagnosed I’d like to tell them: Life doesn’t end, especially if you ‘only’ have a bag, you can life a normal life, As far as living with pain and fatigue goes, you can still have a life, it’s just a different kind of life.

27. Something that has surprised me about living with an illness is: how priceless ‘good’ care is.
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me dinner, cooked it, AND washed up!!
29. I’m involved with Invisible Illness Week because: that’s just it, illnesses are invisible and people need to be made aware how life altering an invisible illness can be. A lot of what I suffer, I suffer in silence, alone.
30. The fact that you read this list makes me feel: that you care.

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One of my many skills…

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Only writing three times a week now means I have my pick of the ‘daily prompts’. This one is from the 18th, and it goes like this:

What have you been putting off doing? Why?

English: an animated clock
English: an animated clock (Photo credit: Wikipedia)

There are all sorts of things I put off doing, and all sorts of reasons for it. On my ‘good’ days I get a few things done, and I have resolved to also do a couple of things on those days which I may have put off. On bad days however, my “shoulda, woulda, coulda” list just gets longer. Things that I think I can put off I do. The trouble is, not being an organised person there is no logical reason things end up on that list, even things that should only take a short time to do. Even on the good days, I never know when I will need a nap. At the moment this is a ‘good’ day, or at least a good morning. I will be exhausted by the afternoon. If I only prioritised things that really needed doing I might be more organised, but I would never get anything done that was just for me. Other days, like yesterday, I fully intended having a writing day, as horse-riding was cancelled. However, I craved company, and sat watching day-time television for several long hours.

This morning, I finally attempted a short story, which I had put off doing, as I genuinely didn’t think my efforts would be any good. The last one I wrote was more than ten years ago in my first year at university. I have other writing projects to attempt. The magazine Tear Times is running a writing competition, and their editor Peter Shaw tweeted me to let me know, and ask if I had seen it, and if I would think about entering. I was very daunted to even begin, and I at this point I have only written a very rough first draft, having forced myself to write something very late one night, having taken several days to think about the brief. I am worrying my entry will not be up to the standard of the others! This is something that plagues me and one of the reasons I put off starting a blog for so long. However, some lovely people have said some lovely things about my writing, so I am beginning to have a little more confidence with it.

I also have a 500-word testimony to write for Christian disability charity Through the Roof which I have put off as the deadline is after the one for ‘Tear Times’. I have a head start on it as I previously wrote a testimony of the same length for Christian Radio Station UCB, which was read out by Mike Rimmer as part of a section called ‘My Story’.

The big project I have really been putting off doing, however is this: For several years, various friends have suggested I write a book. The very idea terrified me. Who would want to read it? Now I have written a blog on and off for a year, and a had a not very subtle push from specific friends, I am beginning to think about it. However, old habits die-hard. I am still tempted to shrink into the background again. Even short blog posts are such an effort most days. However, others who have recently submitted first drafts, or who are currently writing them, have inspired me too. I have yet to decide what style of book it will be. This I do know; that I will write about what I know… and my faith in Jesus will also play a part. Without measures of healing throughout my life, I would not be here. I am on roughly my 7th or 8th chance at life.

While at university, particularly the first time round, my ability to procrastinate was well-known. I was the Queen of Procrastination. To my shame, I admit I submitted some essays late which horrifies me now.A friend once bought me a ‘little book of procrastination!  Were I to start over, I would want to do things completely differently. I would always start each year, or even each semester with that intention, and every semester I would fail spectacularly. Ill health had a part to play in this, as this was round the time hospital admissions began. I was also starting to struggle with my mobility and be in more pain, and it was three years before I sought help from a learning assistant for things like typing, accessing the library and so on. I didn’t think my disability was ‘bad enough’. I did not want to admit to myself how much I was struggling. However, I began to have panic attacks. Eventually I gave in and accepted some help, however, it did not really help with my lack of organisation. Even during my Masters degree I had all the same struggles, despite best intentions to the contrary. Ill health also had a part to play as I got poisoning which put me in isolation in hospital, and exhausted me for months.

However, none of this ever sat easily with me. I read a bible study about procrastination very recently which said Christians have no excuse for putting things off. Even though I know this, it still has a hold over me. Whenever I do manage to complete a ‘To-Do list, or even the majority of one, I do feel a sense of achievement. Failures from the past still haunt me. I think “I managed so and so, but I didn’t manage this, that or the other…”. I have started to use the ‘schedule’ feature on WordPress, so I can write posts one day, but they are not available to you until a couple of days after that.

I hope one day, to  conquer this bad habit of mine, with Jesus help. Until then, however, i will still have my “shoulda woulda, coulda” list. As for when you can expect the book, your guess is as good as mine. You do have my word I will start on the book soon, though just remembered a monthly writing commitment…! Will I ever beat procrastination?!

Mirror, Mirror (2)

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Mirror, or vintage iPad (thanks obni)
Mirror (Photo credit: christing-O-)

A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:

Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?

The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.

The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to  surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is  an afterthought, and not from the outset, and I wanted to think about it from the beginning.

The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.

If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?

This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.

The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.

Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.

I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!

Five-minute Friday : Small

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I wrote the following for ‘Five Minute Friday’.

Right at this point in time, I feel small. Not small as in small child, but small as in not-very-tall, not very strong, and not very clear of mind. It is linked in with the previous entry I posted this morning. With missing someone buckets with whom there are memories… lots of fun, and laughter, private jokes and common interests. An adventure which had only got going and came to an abrupt end. For a long while only numbness, now, only pain.

Small people actually help me find my smile… little ones in the local supermarket who are gurning, until they see my chair, and watch, fascinated, trying to work out what is going on, or the little one in the chair in the street, leg stretched in front of her, her bright pink cast protecting her poorly leg, and a big smile on her face. These precious ones make me feel better, and wish I was small again, when I didn’t know grown up pain.