Five Minute Friday : Better Together.

I never used to like ‘me time’. I used to crave the company of others and hate spending so much time on my own. I have to say that these days the opposite can often be true. Perhaps the right balance is somewhere in the middle though. Together is Good. Together is to be treasured, worked on, and savoured. I have a friend I love to bits who I meet up with a couple of times a month. We have lunch, and sometimes, followed by hot chocolate. Depends how much time we have, or what mood her little boy is in, as these days, he is part of things too. A lot of my together time happens in my flat, at church, or even online. Scripture says ‘not to give up meeting TOGETHER as some are in the habit of doing’. Truth is we need each other. We were never meant to function alone, at least not all the time. Solitude is good, especially time along with our heavenly Father, and time to rest, recuperate, and repair our depleted energies. We were made for interdependence on each other though. I am reminded of this several times a day, because I need help from other for a lot of the basics of life.

If we are Christians though, our dependence is on God first, not on our own strength alone. We were made for fellowship, and community with each other. To give each other the comfort we have known God give us. These days, I often seek support and give support online. I have written before about friends I really value who I am unlikely to meet in person until heaven. There are others that for health reasons I most over talk to via technology. I do not often have the energy to meet up, but I do know my friends are there, and can keep tabs on how they are doing. I mussed Church last Sunday as I had not slept well at all overnight and felt awful, though texts appeared from three or four close friends, and the same with Facebook messages with another one or two. I know they noticed I was absent, which is important. We each long to be noticed, by this I knew they cared and I knew they were there for me if I needed them. Even short phone calls can have the same effect. Together is healthy, and together is good. Together with God, and together with each other. Stronger together, weaker apart.

———————————————————————————————————————————————-

This post is for Five-minute Friday. Why not have a go yourself? I’d love to read it!

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

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!

Five minute Friday: Laundry

I wrote this short post yesterday for ‘Five-Minute Friday‘, but forgot to post it, so here it is!

I am someone who has rather a lot of laundry. I’ve been without my ‘big wheelchair’, and so been so tired from half-baked attempts to get around other ways, I have had a bag accident once a day where I’ve had to change half or all clothes and put them in the washing machine. Yuck. They’re not pleasant and involve lots of effort to sort, either by me or others, depending what’s happened.

clothes pegs on a washing line
clothes pegs on a washing line

But then there is that other kind of ‘dirty laundry’ – those things we would not wish others to know, and if they do, then it is embarrassing and extremely unpleasant to face the consequences, and it may be something which hurts others, by it a rumour which gets out, an affair gets discovered, or an argument between an (ex) couple on social networks such as twitter or Facebook. Any of those things, or countless other examples could be called ‘airing our/their dirty laundry in public.

What a stinky, unsavoury mess, right. The name for examples like that is sin. The only One who can wash our dirty laundry clean is the Lord Jesus. His blood washes us clean, giving us brand new, shining white garments to wear. Things have happened recently which have made me acutely aware of my own shortcomings, because I let my standards slip badly. I am so grateful to Jesus who gives me something I don’t deserve – his unmerited favour, a good gift called Grace (a bit like getting ice-cream even though we’ve been naughty, instead of what we do deserve – punishment. I can never fully grasp what Jesus did for me, and continues to do for me, but what I do grasp, I am extremely grateful I can give up my dirty laundry and be washed clean – so can you!

(tell me why) I don’t like Mondays…

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!

Five minute Friday: Ordinary

When I think of Ordinary, some other words come to mind including ‘Normal, Mundane, Boring’. My life is none of those things, and neither am I. Ordinary, or Normal, means ‘able-bodied, capable, independent, an ‘ordinary’ body where almost everything works as it is supposed to. My body is not ordinary, far from it. It is disabled, or differently abled, and I depend on support from others to do basic daily tasks such as washing, dressing and making meals.

Neither is my life ordinary. I am young, and yet, like a retired person, I can no-longer make my own living. I depend on the taxes of others to give me an income so I can have some sort of life. The people I see on a daily basis are not work colleagues, they are carers, nurses, doctors, wheelchair engineers, physio-terrorists ….

Yet in other ways I am ordinary.  I am a young woman with hopes, dreams, fears, struggles and joys. I have a need to feel useful, to contribute so society in whatever way I can and so give my life meaning and purpose. Not only that, but I was created with a meaning and a purpose in mind. Before I was born, every one of my days was written in God’s book. (Psalm 139:4) This week I have done that in a tangible way by blogging, tweeting and emailing, more than I sometimes manage. Ordinarily, one day merges into the other in the sameness of my life. I’d encourage you to read my previous blog post and consider signing the petition I highlight, if you are eligible, to stand up for those who cannot – ordinary people sticking up for those society considers extra-ordinary or different, and yet who are human being too with hopes, dreams and fears. Fears that even the basic lives we have are under threat. This is why we all need to stand together. In standing together, we can do something extra ordinary!

Five minute Friday: Write

Writing
Writing (Photo credit: Wikipedia)

 

There are many times where I am too poorly to write, or so tired that I either cannot get my words out or I cannot sit up straight enough in my wheelchair to write without falling asleep. However, there are other times when the words pour out of me. If you are a regular reader to my blog you will know I am quite an emotional person at times. Today I am in pain. Physical pain from yesterday’s first hydrotherapy session, and heart pain, as the bloke formerly known as ‘special someone’ and I have had issues this week. Oh how messy can life get? However, their loss!
I am planning a weekend of writing to take my mind off him, and off the hurt; Three different posts for this coming week, a reflection on the Holy Spirit for the minister of a church I used to attend for the beginning of their series on the same, a guest post for Wendy Van Eyeck’s blog ‘ilovedevotionals.com‘, and yet I feel I am missing something. Pain provides great motivation for writing though – Is this one of the greatest paradoxes ever?

 

—————————————————————————————————————

 

To have a go at Five-Minute Friday, just click the link! Write for 5 minutes, non stop on the given subject, and you may just surprise yourself.