RSS

Tag Archives: Muscular Dystrophy

Intelligence Prevails

LOOK WHAT I HAVE IN MY POSSESSION!!!

Not long after my sustaining morning coffee had been supper my phone began churning for my attention. Over-Intelligent Pharmacy Lady was calling to say my high dose vitamin D had arrived and she was all primed to take my card details.

Taking care over my diction I slowly read out the long number, then the relevant details and we both held our breath as the green button was hit. Et Voila! Payment accepted, package in delivery box due out at 1pm.

Shortly after 1pm a lovely lady knocked on my door and left the package on my desk.

For the inquisitive, each tablet is 500 micrograms, I am to take a capsule twice a week for seven weeks. The average recommended daily dose is 10 micrograms and the recommended daily dose for an MD-er is 25 micrograms.

 
11 Comments

Posted by on July 20, 2020 in Life

 

Tags: , , ,

Repeat the Prescription for Frustration

Dear Reader, for your delectation and delight I have for you the next thrilling instalment of ‘How to get a prescription’. If you recall, yesterday I had to and fro-ed between Pharmacy and GP to get my prescription, as of last night a second script was being pinged over to the Pharmacy.

After fuelling my motivation with a little chocolate I dialled the pharmacy and asked if they could find me on their system (yes), had my prescription been received (yes – things are looking up), how do I go about paying for it and getting it delivered – pregnant pause of ominous silence – the mighty powers that be have decreed that they cannot take payments over the phone for prescriptions and the drivers are not permitted to carry any cash, so in short, there isn’t any way a housebound cripple can pay for meds so they can be delivered. Typical, unsurprising, almost expected.

While pondering who to ask to expose themselves to the idiocy of people during this pandemic in order to collect this not exactly necessary concoction the phone rang.

A far too intelligent for her post Pharmacy lady called and put forward an option. The specific, exact same as prescribed VitD is available to purchase, over the counter, no prescription required, and it can be paid for over the phone and delivered for free, AND it’s cheaper than the current prescription charge (£9.15). Yes, we will go for that, except she has none in stock *sigh* but it will be on Monday and things can be sorted then.

So essentially if you ever fall ill, don’t need a prescription. If you do, be in a category that doesn’t pay. If you do have to pay, don’t be so ill you cannot get your carcass to the pharmacy. If you can’t, well ‘computer says no’.

We wait for Monday…..

 
10 Comments

Posted by on July 16, 2020 in General, Life, people

 

Tags: , , ,

Prescription For Frustration

Remember the good old days, when a fat expensive ink pen splurged over crisp white paper, that was ripped from the pad with a confident flourish. You clutched said note to the Pharmacy, holding hope and relief as the concoction was dispensed and off you tootled with the miracles of modern science in your tender hands – the whole process taking a mere few, almost imperceptible, minutes *sigh* oh the nostalgia.

But progress brings change, advancement brings efficiency and new methods need learning. I am at the end of day two of getting a prescription sent, filled and delivered and as I type, the system does not have the drugs to my door.

My Rehab Consultant is pretty gung-ho on MD-ers taking Vitamin D, whereas my various other Consultants are non-plus about supplements, during a video conference the subject was broached but no firm action decided upon as I tend to take an over the counter one anyway (when I remember ….. which reminds me …. be right back) . Anywho, Hospital sent request for high dose VitD capsules to GP, sometime passed before I received a copy of the hospital report which had detailed under action that a prescription request sent. I had heard nothing, not surprised, my GP surgery hovers between ‘in need of improvement’ and special measures with the CQC.

I have not had a prescription for anything in around, fifteen years, but have heard many a saga from many a person about the trials and hassles of getting their drugs. Taking the bull by it’s wot nots yesterday I called my surgery and they tapped their keyboards, scratched their heads, did the do, asked questions to which my answers perplexed them further, and sent the prescription electronically within moments to the Pharmacy of my choice (in the room next door to Doctor’s reception, they could literally have shouted it across).

Today I call the Pharmacy to see how I, as a house bound crip who has to pay for and then get it delivered, get my hands on this chemical sunshine ………guess what…….. it’s gone missing in the system. (I stifle urge to say “Computer says no”).

I called the surgery and asked the question, which was met with another round of perplexed replies which eventually settled on resending the request and ‘hopefully’ the Pharmacy will call me back shortly. “Hopefully”, hmm, my cynical self thinks that is going the way of common sense and logic, I also foresee getting two scripts for the same thing and both being filled and charged for.

So here I sit ….. waiting ….. wondering whether to call the Pharmacy or wait for them to call. With my mind conjuring visions of electronic prescriptions pinging and ricochetting like ball bearings in a pinball machine around the clouds, which are looking ominously heavy as I stare out the window.

Progress ….. tis a wonderful thing.

 
6 Comments

Posted by on July 15, 2020 in Life, people

 

Tags: , ,

Sensible or Sinister

I know I have to move home, but where to go and how to go about it, is a big scary slathering barking hell hound. Going from financial and roof-over-head security to not being so much so. There is a great deal to wrestle with.

Since about week three of lockdown isolation my mind has been racing to an idea, to go through every single item in my hovel and either sell it, donate it or bin it, keeping only a very few considered key items. I really do mean everything, every keepsake, gift, trinket, souvenir, ornament, memento, book, cd, dvd, photo album, crockery, cutlery, glassware, clothing, shoes, costume jewellery, hobby item, stationery item, tool, cuddly, pot, pan and dish. Slim everything down to only the necessary minimum. I have held onto things in order to feel connected to people, places, memories, times when I felt included, involved, almost necessary.

As I cannot move about to fetch things or return things, why keep them, is knowing something is in an inaccessible drawer any different to knowing I once had it. Why hold onto kits, cloths and silks when I’m never going to cross stitch anything again, why keep the pieces I’ve done that are sitting in the drawer, done to fill time. There are things in this abode that haven’t seen the light of day in 5-7-10+ years. There’s a box of vinyl records in the wardrobe that have been there 15-20 years, I don’t even know all the albums that are in there.

But I, myself, cannot do any of that. Someone else will have to lift and fetch and handle. Whether it be taking items to a Post Office to mail, or local refuse/recycling collection centre (7.5 miles away), or charity shops. Someone else will have to fill the recycling big or general waste bin. I might have the idea but others will have the execution.

With my increased deterioration I will need more equipment, power chair, manual chair, shower chair, hoists etc, all which need space to be kept ‘out of the way’.

Is this need a sensible preparation for the future (even maybe getting ones affairs in order, when that times comes), or is it a sign of something relating to mental health triggered by my changing circumstances and the weeks, months, of lockdown.

 
9 Comments

Posted by on May 30, 2020 in Life

 

Tags: , ,

Stunned

Well, dear reader, I am somewhat stunned into disbelief, silenced and generally in a state of befuddlement.

Postie dropped an ominous brown envelope on the mat. It felt a little thick, hmm, so more than two sheets of paper, is that a good sign.

Okay, so maybe this is the letter about the face to face interview, I’ve been expecting the need for one. Is it an instruction to attend an interview somewhere miles away or maybe a face to face at my home at before-carers-arrive o’clock. Which ever it’s likely to be something that needs my input and wrangling with a call centre.

Tentatively I slit open the envelope and with a degree of trepidation I took out the sheets of folder paper and began reading. Initially I couldn’t comprehend the content, I finished my coffee and tried again. Well… well… well…….

This was not a request for extra info, nor details of a face to face interview, nor details of not meeting the criteria. It was in fact an award letter. Not just an award letter but an increased level of award letter. Not just that but an indefinite award letter. Not just that but details of back dating award to September.

😳

All that attention to detail and chasing for assessment reports and so forth was worth it. Okay so the care component only covers a quarter of the bill, but with the mobility component that bumps it to half. That should help the saving last a little longer.

Let me just go and read that again …. Incase I was projecting, nope it definitely says enhanced award.

 
8 Comments

Posted by on November 13, 2019 in General, Life

 

Tags: , , ,

Waiting for others

Update ….. ‘still‘ waiting for the Social Worker assessment report. I called to chase up and was called back with someone relaying they message ‘by Thursday’, I’m wondering whether to hold by breath or not.

Today the PIP peeps wrote saying they have all they need to make a decision and there’s no need to contact them (I’m still intending to send the Social Worker report when I get it because I think it’s necessary).

So, I’m waiting on people who are necessarily bothered about time tables and deadlines.

*sigh*

 
5 Comments

Posted by on October 8, 2019 in Life, Projects

 

Tags: , , ,

I’s crossed & T’s dotted

The dreaded form was given another read through, I had neglected to make it plain and clear that my physical restrictions were constant and unchanging, no good days or bad days just days. While BFF was here we scanned in my Occupational Therapist report so I had a copy on the computer, printed off the support letter from the MD Care Advisor and another copy of the OT report (even managed to fandangle the two-sided printing!)

We scanned in my completed form, it’s the best way I can keep a copy of exactly what I had written. We made sure I had signed the form, stapled the evidence together and slid it all into the envelope provided, Now even though they provide a freepost address I decided to send it belt and braces. When we went to the Post Office I said I wanted it sent so I could check online to know it’s been delivered, I paid the £7.40 and got the stickers stuck.

Next day I checked the tracker and took a screen grab showing the time, date, address and signature of recipient. Phew, it’s in the building, I have done all I could.

Now I wait ….. wait for the Social Worker report, scan it, print off a copy and send it to them (and hope it finds its way to the rest of my papers) ….. wait for the decision from DWP as to whether there’s a face to face visit or not.

*fingers-crossed*

Phase one complete, begin waiting for phase two.

 
6 Comments

Posted by on September 17, 2019 in Projects

 

Tags: , ,

Unprofessional Professional

August 23rd, the day when plans went wrong and although it was 99% circumstantial I was 100% put out by it all.

The day was supposed to go along these lines, 2:15pm organised care visit to load up the slow cooker and have a toilet stop, 3:00pm social worker visit to update care assessment and risk plans report, 5:30pm Nephew delivers fresh bread, 6:30pm dinner making care visit.

This is what happened, 2:15pm carer arrived, usual pit stop routine, start loading the slow cooker and the phone goes. Social Worker called to make me aware he was running about thirty minutes late. No probs, all good, sit and wait. Postponed BFF’s walking home 4pm phone call. Waited some more. 5:00pm Social Worker wandered in, no apology, no explanation, sat down ready to go through lengthy assessment which needed many edits, as well as corrections and additions. 5:20pm carer arrives, now I could have said it was not convenient but then I wouldn’t know when or who would be arriving and my dinner was brewing, so forego toilet pit stop and while she’s dishing up my noshings Nephew arrives on time with bread.

So here I am, eating my dinner, Social Worker still here going through report, unable to spend quality one to one time with nephew (first opportunity since Big Sis, his Mum, had died and we’d held the service).

Social Worker eventually leaves about 6:15pm with promise to get report done and to me before I need to send my PIP form back.

As no report dropped through my door by 3rd September I telephoned the office to be told my Social Worker was on two weeks annual leave (why didn’t he mention this at our meeting) and was told someone would call me back. 5pm the next day the call is returned and caller says SW had left a note that I ‘might’ be calling about it (too bleeping right, I was waiting for the promised document). Essentially the note was sorry I’ll get it to you after I get back 🙄.

 
6 Comments

Posted by on September 16, 2019 in Projects

 

Tags: , ,

Battle Commenced

After taking an afternoon to read the instructional notes and the forty paged PIP2 form, I ruminated, cogitated, considered, made notes, and sat at my desk last Saturday morning and began the dreaded task.

Okay so the first couple of pages were not so daunting, listing the names, address and last appointment dates of medical professionals I have contact with. They only have boxes for three, I have six, hmm, how to prioritise, those I see the most (Physio, Occ Health) or the more important sounding (Consultant, GP) and make a note to add the others in the ‘additional information’ section.

Now to the gritty part, how my disability affects what I do in general areas of life, how it’s gotten around, what aids are used, what extra is needed. The tick boxes are ticked, then the explanation paragraph, how to be concise and exact to cover all scenarios within the half dozen lines in the box provided. Completing these things can be mentally demoralising because you have to admit, in writing, all the things I cannot achieve and the impact it has every moment of everyday, the exact opposite I am trying to think about every moment of everyday. Also I am so used to doing things the way I do, it is easy to forget it is not the general natural way that ‘ables’ do it, my usual is so normal I don’t think of it as different or awkward, but it needs adding to the form. Always keeping in mind the reader knows less than nothing.

I scribble draft one in pencil on my note pad, edit it, and check the wording for its accuracy and spelling before committing it to the form in ink. As my fingers, wrists and arms are affected by my FSHD I struggle holding the pen/pencil and writing clean and clearly for any length of time can cause strain and cramp, so after three questions that’s enough. Time to put it away and come back to it another day. I returned to it Sunday morning, reread what I had written, add something I had forgotten and start again with the next question, and again on Tuesday, making other notes of what to add in the ‘additional information’ page.

So far I have a detailed letter of support from the Muscular Dystrophy Regional Care Advisor and a lengthy report from the Occupational Therapist, I am waiting to receive a second lengthy report with risk assessment from my Social Worker.

Across the weekend I will finish the form, a friend (former work colleague) is visiting Saturday and she’ll read it through to see if it makes sense. Then Sunday I’ll scan the pages into my computer and copy the reports I have, printing my details on the back of every page incase they get separated in the office. While my BFF is here we will wander to the post office and despite it being a free post return, get a certificate of postage, pay extra for it to be tracked and signed for. I’m wondering what it costs to hire a guy with a briefcase chained to his waist because I am not going to be happy if it goes missing before being properly processed.

The saga continues…..

 
9 Comments

Posted by on August 30, 2019 in Projects

 

Tags: , ,

It did indeed thud

Well the doormat actually groaned as the large A4 sized brown envelope collapsed to the floor. There I was, comfy under my duvet, contemplating my day, waiting for morning carer to arrive when this *thunk* travelled from porch, across the lounge, along the hall, into the bedroom and landed in my dozing lobes.

The accompanying booklet some twenty pages, along with the forty paged form, it’s covering letter and return envelope amounted to a significant hunk of pulled tree.

I’ll be busy for the next couple of weeks while I take time to put together my evidence (which I’ve chased up again) and carefully and concisely complete the questions and add the additional details as required.

This is worse than any examination I’ve ever done, the stakes are pretty high too.

 
4 Comments

Posted by on August 21, 2019 in General

 

Tags: , ,