Category: This was the week that…

Communion, Community, and the washing of feet – An Easter Reflection

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In recent days, I’ve been dealing with a ‘pain flare’, where pain is much more severe and longer lasting than it’s usual bubble-in-the-background level. This, not the bank holiday is the reason for the lateness of this post. However, the following event was the brightest spot in my misery last week!

An Act of Remembrance…

Last Thursday afternoon was our monthly  Holy Communion Service, held in the afternoon rather than the usual late morning time-slot. Coinciding with Holy Week, the annual remembrance of the final week of Jesus’ life, from Palm Sunday onwards.’Maundy Thursday’ is the annual day when Christians reflect on Jesus final meal with his disciples. ‘The Last Supper’, as this meal is commonly known, is when Jesus reveals to His disciples the real purpose of his life. Far from being a Warrior King who intended to end the Roman  Occupation once and for all, at Easter, we remember that, according to the Will of His Father, Jesus gave Himself that we might be set free from sin and reconciled to a relationship with Father, Son and Holy Spirit.

Usually our monthly service has 4 or 5 of us in attendance. With Easter so close, I tried extra hard to let people know what we doing and why, and prayed for God to work in hearts, before, during and after the service. I’m not easily surprised, but the decent sized sitting room was packed with 7 residents at various stages of faith, relatives, a couple of members of the congregation, as well as the priest (vicar) herself. A mismatched community, all worshiping together makes my heart sing, and no doubt God’s heart too. I loved having to ask people to move up, to make room for someone else’s [wheel]chair!

Foot Washing

I’m not sure how many of you reading this will have been to a Maundy Thursday service or meal, but there is often an opportunity to volunteer to have a foot (or feet) washed. This is an act of service, demonstrating Jesus servanthood, because  a king, would usually be served, rather than serve others, and this act symbolises the cleansing that Jesus offers us through his saving work on the cross. Three residents, including myself, eagerly agreed to having a foot washed. There was a Bible reading in the form of a drama, focusing on the scene where Jesus washes the feet of his disciples, and a short act of Eucharist or Communion. Those not wishing to partake could opt for a blessing or prayer instead.

Including the Excluded

Those watching on during the foot washing were visibly moved. The power of including those who are often sidelined should not be underestimated. Aside from being more time consuming, (think removing walking boot type shoes/calipers etc.) the vicar/priest freely washed the feet of those very often excluded, or not thought of at all. Each of us were asked to shout or squeal if removing boots or slipping off/on of socks hurt in any way. Loud noise in a communion service isn’t usually welcomed, much less expected. Now nobody flinches should someone start coughing, or should somebody’s foot hammer on the footrest from spasms.

Doing as Jesus did, and does…

I’m not sure that the vicar herself realised the significance of what she was doing until after the service was over. Keen not to let the moment slip by, I went over to chat, and explained what I  was thinking. Jesus went out of his way to spend time with those left out and marginalised, and He too would have washed our feet. It was humbling to be included and so cared for, when many times I’ve felt excluded.  Members of the congregation now accompany the vicar (priest) each month. By creating a worshipping, inclusive community, this church is helping to change society in myriad small acts which do not go unnoticed by Jesus himself, and God the Father.

I’m praying that those in attendance will continue to think about what they saw and heard that day. and especially than each may have a personal encounter with the Saviour who willing gave Himself, body and blood to reconcile them to himself. The vicar washed our feet, but Jesus cleanses our souls!

Happy Easter Everyone!

More than ‘just’ a garden…

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BW Front Garden

Last Friday, the 15th July, was a special day in the lives of the staff, volunteers and residents at the Nursing home where I now live. 2 years of hard work from a committee, local businesses, National Citizens Service (16 yr olds who volunteer) and many others who I’ll never meet, had been leading up to this day…

The (Front) Garden Reopening

Most of my housemates and I made a special effort to dress up… wearing out the staff who assist us! The volunteers were kitted out in T-shirts bearing the name of the charity who has overall responsibility for the home, and extra staff volunteered. There were even distinguished guests: a mayor and mayoress (very lovely, kind-hearted people) and a representative of Her Majesty The Queen, a Lord Lieutenant (who to my surprise was a female) not surprisingly accompanied by a small entourage, and two local MP’s. Not forgetting the children’s choir from a local junior school, and a samba band! 

Unfortunately, the sunshine didn’t really appear until mid-afternoon. Just in time, thankfully, for the, re-scheduled speeches from most of the distinguished guests, the garden committee and the home’s manager.

I’d been unable to resist my natural role, that of a social butterfly, despite fearing the after affects. I swallowed my fear with a silent prayer and carefully maneuvered through the throng, introducing myself rather cheekily, as the youngest resident. This feigned confidence helped me to continue as I’d started despite tiring fast… Making enough of an impression to be mentioned in dispatches by one of the local MPs… He explained the difference the new space would make to someone like me with friends who live some distance away. Any visits need to be made the most of, to keep friendships strong and vibrant.

Silver plaque with engravings
The names of those who opened the garden or contributed in some way

Given the late appearance of Sumner, it’s been very hot with more than some humidity in the home. Whenever I could manage some time outside the home the new space really helped, especially since two good friends made seperate visits this week. We’d somewhere to go that I could eaisly navigate and chill out in while topping up our vitamin D and catching up on each other’s news.

Healthwise, this has been the best week since I don’t know when… no doubt due to the weather and great company. Not forgetting, of course other outings to a local church with my key worker, lunch out with a different member of staff and a lunch out with my parents. 

Of course, I’ve written this post while in the garden, but this time sat under the shelter of the gazebo, watching the weather turn sunny from light rain, and back to cool gray skies. I’ll leave you with some of my photos of the view. Until next time…

Gifts

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As October is now upon us, I imagine that, for many for you, your thoughts are beginning to turn to gift buying for Christmas. Which gifts, for who, and from where, and how to spread the cost over the weeks. So will I shortly. However, here, we are talking a different sort of gift. Specifically those our Heavenly Father gives us to use for the benefit of others. These type of gifts are also known as Spiritual gifts.

While working through my morning devotions one day, I came across a nugget of truth from Joni Eareckson Tada. She writes, “Giftedness works best in people whom the world would never choose to accomplish a task.” (Taken from email devotional on 6/9/14. This includes but is not limited to those the world labels slow, difficult, different, disabled, elderly, unskilled, special needs… I am sure I could fill most of this page with such labels! Nowhere is the truth of this statement more clearly seen at my local Christian enterprise, where those who fit such labels are encourage to try different projects until they find the one thing they excel in, or too put it another way, their gift. Many do not know what they are good at, as they have never had the opportunity to find out, or been encouraged to do so, or indeed may have been given so many labels by different people or so used to failure they do not feel good at anything. Equally, most people would not expect a premature baby who has undergone at least 5 major, sometimes catastrophic surgeries, and who has endure intensive care more than once to have gifts either. However, God can use anyone for his glory, be they myself, or someone at the local Christian enterprise, or indeed, the gentleman in the YouTube video. Please, do take the time to watch, and thank God that his gifts show up in those we do not expect to have anything to offer us. Take some time today so consider what your own gifts might be, too, if you have never done so. More of my story to follow on Monday. For now, enjoy the video! (N.B. See this website for more information).

Transport woes part… (I’ve lost count)

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Despite being back on track with my writing now, generally I have found it difficult to write this year, unless something particularly grabs me. This is one of those posts. (N.B. I wrote the remainder of this post roughly six weeks ago, but facing Hospital Transport tomorrow, this post is pertinent!).

Old worries revisited

I have many things in common with fellow disabled people regardless of disability type or severity. Difficulties finding, and keeping affordable transport are almost universal. I’ve barely been out of the house recently, either because of myriad problems with my electric wheelchair, difficulties with care or a health related problem.
This morning, however, I had an unavoidable blood test. I have to use transport to get there so I can have the finger-prick test much like a diabetic person would do to check their blood sugar levels rather than a regular blood test. I am often told children have bigger veins than I do.
This morning was different, because instead of the usual transport vehicle it was a taxi contracted to do the same journey on their behalf. Rude, impatient and uncommunicative and on their hands free phone for the majority of the journey, I was apprehensive about being dropped off at the conclusion of the journey. I should say as far as I can tell my wheelchair was tied down properly.

Unexpected Intervention

Not expecting any further help, I slowly pushed my wheelchair towards the dropped kerb. Unexpectedly, someone in the next car addressed the driver, asking if he was on NHS work all day or just the one job. He said ‘just her.’ The driver then said he should really help me get inside so the taxi driver motioned towards me as I inched toward the pavement. I swear my garden snails would beat me. The other driver swiftly said “it’s just we’ve been warned, you know…” Tada, my driver’s attitude transformed. He propelled the chair at speed towards the building and asked civilly where I would like to be, saying thanks as he did so. I think it was for keeping quiet in front of the person who reprimanded him. Job done, he left.
After my blood test, I plucked up the courage to complain. I wouldn’t usually, but I felt I had to this time because I wanted to make sure the same driver wasn’t taking me home. I was concerned others would be at risk if faced with this same driver too, in terms of their emotional well-being if nothing else, or more, if they didn’t get the necessary help either.
Imagine my relief when an ambulance technician I had seen before rocked up. I knew everything would be fine after that.

A timely reminder…

This morning reminded me of an important lesson though. God doesn’t always answer our prayers in the way we expect. I suspect you are wondering how transport and prayer are related? You see, this morning I was in such pain I was almost in tears. I’d prayed God would lessen the pain as I knew I had potholes and speed bumps to endure on my journey, and asked a couple of others to pray too. Being driven by taxi meant being driven straight there rather than all over my side of Leeds to collect others, ensuring a shorter, smoother journey, despite the unpleasantness. Thankfully, on the journey home I’m first to be dropped off. What a relief,  answered prayer, and an important lesson remembered.

An update on the problems, and the possibilities!

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New Week, Old Problems

Morning everyone! In my last post, I mentioned some of the negatives that have been plaguing me recently, and some of the positives which counteract these. Specifically, the unreliability of both my health and my wheelchair continue to be constants which interrupt the life I would love to live. Last week, I took delivery of a small electric wheelchair, reconditioned and fitted to me. At first, all was well. Though not nearly as supportive as my aching body needs, it was at least working, and getting me round my flat, to the doctors surgery or church, and even a trip to my nearest city to meet up with  a close friend and her small boy. The peace, and freedom, has been all too short. Noisy wheels are back. I was assured that it was probably just the plastic from the wheelchair and the rubber tyres colliding in squeaks, but to contact those with a responsibility to fix it should it get worse. That’s what I will have to do later this morning, at the risk of sounding like a moaning minnie, as the wheels don’t actually feel very safe, besides being noisy. They are, at least still working for now, which is more than can be said for my previous chair. It has now been collected, thankfully, so there is one less set of wheels to negotiate round when I want to get from one room to another. Even this is an improvement on recent weeks, so it;s not all bad! Hoping the problems have a simpler solution, with it being a simpler wheelchair!

Accomplishments (at last!)

My health has continued to interrupt my writing because I have continued to need to hone my sleeping skills! I am however having more ideas for posts to write and being able to do a little more without falling asleep, so though it is slow, there is definitely progress! I’ve managed to complete a few small projects, including the first chapter of a memoir and the query letter, which I emailed off within the right side of the deadline with a few hours to spare (go me!) The hard work paid off when a friend I asked for feedback really liked it, despite a few errors. Thanks, Caroline for your input. If further chapters ever see the light of day, I’ll definitely be sending them your way! I read it to a carer as well while she cleaned, who also really liked it, even though they have completely opposite background and personality to me… I mention these things, because I see it as a really good sign that the same material has been received positively by completely different people. Just awaiting the feedback now, but there is a long wait of just under two months, so I’m trying to forget about it!

I needed quite a few days to recover from writing the chapter, including a few more than expected. I have no idea what is continuing to exhaust me, and don’t know where to start trying to find out. Despite this, I have managed to lead a meeting of a women’s group I am part of, where I talked about the last few months, and the ways I attempt to maintain joy and a prayer life, with a lot of enabling from my Heavenly Father. Just getting the talk written was last minute battle, as I couldn’t stop falling asleep in front of the laptop! However, I succeeded in the end, thanks to the faithful prayers of some close friends as well, a couple of whom were also at the meeting. It’s always encouraging for me to be able to use the things I have been through to encourage others, and explore ways we can find joy in our pain and reach others in the midst of it. I will post my talk soon once I have edited it. It’s still full of the typos I didn’t have time to edit before it was time for the group, but should be next Monday’s post!

I’ve continued to host WOWChurch services on a Sunday too. I think I’ve done three now, and despite posting the wrong link to the teaching slot, my confidence is growing. I chose to look at joy the first week, as it also tied in with trying to prepare for giving my testimony, Spiritual Gifts (on which a post is forthcoming!) and last night’s topic, prayer. In thinking about prayer, we also used what we learned to pray for Christians still in parts of Iraq, and the larger contingent forced to flee. I have seen some news articles focussing on the particular troubles for Iraqi Christians, but not many. If you would like to know more, see this recent feature from The Daily Telegraph. If you do the praying thing, please do pray for Christians in Iraq at this time. If you would like to know more about WOWChurch, you can find contact details for Dave Roberts, as well as short podcasts at www.davegroberts.podbean.com

What else does this week hold?

This week I have a meeting to try and reinstate funding for warm-water based physiotherapy, commonly known as hydrotherapy. I am SO looking forward to that beginning again, albeit with help from a different agency than the ones who accompanied me before. This week sees an ending too. I hope I’ll have my final appointment for anti-coagulant therapy to fix a blood clot I got in my leg in hospital from inactivity due to the seriousness of my surgery, It will be great to be free of such a major tablet, and have one less batch of appointments to think about. I am hoping though, that my transport is more successful than last time! A transport-related post should appear (as if by magic!) on Wednesday. I had thought I knew what I was posting on Friday, but I have forgotten what that is, so hoping I remember soon! I have a fairly boring but productive week ahead. This means unless I need to sleep it all off (which is likely) I should have more time to write! (Hurray!!)

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.
image

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!

The one with the Hospital…

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I do so hate all these absences from my writing. This time, it’s because I was in hospital. I am still in hospital, actually, just writing this from my room as my lovely Mum got mobile Internet sorted out. I am likely to be in for another 2 weeks at least so it is safe to say you can expect more blog posts. I do however, have to catch up with promises I made to write guest posts, and write the reflection on the Holy Spirit a minister asked for. At times if feels overwhelming, though not as much as when I was in my flat feeling shattered and wondering over it all.

It is easier to cope with things in hospital in some ways, because my parents are the ones watching my post and helping with paperwork and so on. My friends come and offer a very welcome distraction from the (sometimes) mind-numbing boredom. All I have to do is concentrate on two things; my relationship with Jesus, and getting better. Thankfully, I am getting better, though I did have entirely separate week-long stints in the High Dependency Unit after the first emergency operation and Intensive Care Unit after the second. Doctors are amazed I have come this far given what I have been through, but my Gran’s friend was right when she said God obviously still has a purpose for my life and work for me to do. After all, despite what society thinks, it is God who gives life, and God who takes it away.

I have had excellent care during this hospital stay, though it hasn’t always been easy. There have been times I have had to shout loudly to get the help I need with basic tasks such as washing and dressing, or cutting up food. People kept asking “and how do you manage at home?” Over and over, I’d say, I don’t, I have carers in three or four times a day. It reinforced negative feelings of not being good enough because I could not look after myself, which prompted me to speak up. This time I knew I had to ask for help to make my needs known. Once that happened I felt more comfortable around the ward. I did however raise the issues with an appropriate person. A bit unusual for me. I didn’t want others with multiple impairments to straggle as I had. One dept. generally focuses on their own issue to the exclusion of all else, which usually works fine, except in complex cases like mine.

 I’m on a ward again but in a side room, where nurses wear yellow aprons and purple gloves so no infection is passed from them to me or from me to them. Anyone with a cold or a bug has so far been sensible enough to stay away or keep their distance. As a friend said, anyone who visited me while ill, would likely leave me suffering with whatever they had, (as my immune system is so low) while being stuck within four walls (as I must not leave my room and mix with other patients, (again for infection risk) which would me absolutely miserable, on top of everything else – yuck!!

When I do get home, it may not be straightforward, as a different care agency will be assisting me. It was about time I moved… with everything that went on before. For now though I have to eat properly so the wound has enough calories to help it heal. (I have no skin on my tummy, because it’s just an open wound. However, the surgeon and his team have saved my life so I can’t grumble. It will heal in time. I’m off for a nap before the lovely domestic team are round with breakfast in an hour. 

Fifteen on Friday (2): The Battle Within

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About this time last year, I published a short blog post which still makes me smile, about the conflict I have between two different parts of me, the ‘awake’ part, and the ‘sleepy’ part. They often fight each other, leaving me in the middle, feeling dazed, exhausted, and in varying degrees of pain. This affects at least part of every day, if not whole days, maybe whole weeks, and at times, weeks at a time.

This fight has been responsible for many of the absences from writing this year, as even if I am just about awake my ability to think clearly, process information, or form what I want to write or speak is markedly slower and much more frustrating. Countless posts have been begun and lost this way, or even begun in my head before sleep takes over. When I wake, only fragments are left, if I remember what I wanted to write. It’s hard to even begin to explain my frustration or the effect these things have on my life or even all the ways it affects me. Medication, stress, current pain, spasms and disrupted sleep all play a part. A therapist once argued that I don’t have ‘fatigue’ as such, it is merely effects of underlying factors such as pain, and medication side effects coupled with the huge effort it takes me to do anything. I beg to differ, given the devastating effect it can have on my life; but I digress.

Though very rare, sometimes I win the battle. This week I managed to get to church, and stay for the buffet lunch, catching up with several friends I have not managed to communicate with for weeks. Monday was another much-loved hydrotherapy session, and Tuesday, Christmas eve, brought welcome rest. I did have plans, but by this time, pain from all the exertion had taken over and I could battle no longer, being put to bed, and asleep by 8pm. Wednesday, Christmas day, dawned bright, clear and sunny. This special day involved a lift to church and a trip to Social Enterprise, for Christmas dinner, presents and games. In part, I am there because I am on my own, but I am also there as a befriender and listener to those for whom Christmas day brings back untold painful memories and heartache. I had the privilege of listening to/ talking with several people. It is this kind of ‘work’ which makes me feel very alive, and causes me to feel ‘good’ tired, or tired for very good reasons, reasons of my choosing, and not for fatigue. I played Wii games too which I love. I can be competitive and have a fighting spirit in in the extreme; part of what allows me to accomplish anything I do manage, and helps me to persevere through the tired, painful times.

Thursday brought Brunch out with lovely friends, though by this time the fatigue was definately winning. Once home, I had several hour long naps and never really woke up, sleeping brokenly overnight in-between spasms and pain, and causing me to feel apprehensive about another day on the go. This time, to meet up with family for a meal. I loved it, though felt I was much quieter than I can often be. This isn’t necessarily a bad thing, but I resent it because anything I did try to say was an effort and not feeling that well spoilt it a little, though I enjoyed it inspite of everything. Once home, I spent some time with my family before they left early to try to beat the bad weather home. Since then I have drifted in and out of naps, falling into deep dreamless sleep for an hour at a time after supper too. I guess it is good in part as it has allowed me to write this… though frustrating, as I think of all the things outstanding which have been sat these weeks, writing included. In an attempt to focus on the positive things, once I finish writing, I will be very glad I managed it… though I hope for many more times in this coming year in which I, accompanied by Jesus, win this very frustrating of battles.

Care, employment and families – big week for disability

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Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

(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!