Always interesting, often different

A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.

My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain. 

Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis.  My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.

But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me. 

So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk.  At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.

90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.

Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.

Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg. 

The results would take an hour to come through, so I settled down to read my kindle again.  Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.

Thankfully my results were negative – whew!! I was so relieved!!

I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.

Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.

I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted. 

We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.

When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.

 

WheelchairVista has been nominated!!

Many thanks to the lovely Lucy Lewis of The Thyroid Damsel who has nominated me

The Liebster Award is an internet based award given to bloggers by other bloggers as a way to promote each other and get discovered online.

This great idea first started in 2011. The blogging community is a wonderful group to be part of. I feel truly honoured that my blog as been recognised and nominated. 

Before I take on the tasks that Lucy has set me, I want to share a little about The Thyroid Damsel. Lucy has Graves disease, this is a condition causing an overactive thyroid gland. It is the most common cause of an overactive thyroid , also called hyperthyroidism. It is named after the Doctor who discovered it. Lucy also battles with auto-immune conditions as well as fibromyalgia. Her blog gives an insight into her story and how she is still able to work part-time.

As part of my nomination, I have to answer some questions that have been given to me by Lucy, these are her questions and my answers:

1) Why did you start your blog? Was it for money or for love? 

I started to blog when I was trapped in a flat that was not adapted for my needs. I could only leave the flat with assistance from a friend or carer, so was going stir crazy! I’ve always enjoyed writing and wanted to use my blog to highlight the difficulties faced by disabled people. 

2) What is your favorite thing to do? 

I love travel, getting on a plane to visit unknown cities and countries is always a wonderful experience. I took my first trip as a wheelchair user last year, going to Gran Canaria. I’m planning a trip to Malta with friends next year.

3) If you could achieve one thing in your life, what would it be and why? 

I would make all transport, shops and buildings fully wheelchair accessible. This would make life so much easier for those of us who have no choice but to use a wheelchair or buggy. It would also enable us wheelie’s to actually do things spontaneously, instead of needing to do days of planning. It would also make life easier for anyone who has mobility difficulties and parents with buggies or pushchairs.

4) If you had unlimited money for a week, what would you do?

I would travel, probably to the US or Canada. I would also use some of the money to help other wheelchair users. So many of us now have to pay for own wheelchairs, and that is often beyond most people’s budget. So I would set up a fund that could help both adults and children. I would also want to set up a project to increase awareness about hidden disabilities and conditions. This would also highlight signs and symptoms that can often be missed in childhood, which if they had been detected earlier, made a huge difference to those people as adults. 

5) What advice would you give to newbie bloggers and vloggers? 

Find something you are passionate about and become an expert in your skills.

For me the best part of being nominated is that I get to nominate 5 other bloggers for this award. Here they are:

Heather 

Powered by Love

Heather has been navigating disability one way or another her entire life and has recently become wheelchair user. She has years of experience working with physical disabilities, autism, mental health issues and rare diseases, including issues around global delays and palliative care. This is how she describes her blog: The whole purpose of ‘Powered by Love’ is to create a space for change to occur. If you’re reading something and you feel like it’s time to take on the challenge of living more fully as the person you were made to be, you don’t have to do it alone.

Cece Alex

The Wallflower in Wonderland

Cece blogs about epilepsy and mental health. Her posts are wonderfully insightful and she is often positive in the most difficult of situations.

Katy 

Katy the Night Owl

Due to severe health problems, Katy is 100% house-bound, and spend some of her time – when not inadvertently sleeping – by crocheting, reading, or chatting to all the many friends she has made all over the world. Katy’s posts often highlight social inequality issues. 

Sue

Spoon Shortage Sue

Sue is a Chronically sick mum, sharing with spoonies everywhere. She has a very rare disease called Adult Onset Still’s Disease. Which means she needs to use a power wheelchair most of the time whilst fighting a fever, flu-like symptoms and severe fatigue, all part of her condition. Sue has also taught psychology, so some her postings have an interesting prospective.

Sarah

A Life Less Physical

Sarah was diagnosed with Fibromyalgia in 2009. As a result of this she decided to look for new hobbies that didn’t require quite so much physical activity. After a while, the hunt for a life less physical became an activity in itself.

So my nominees, all you have to do accept this award is: link back to this page to acknowledge your nomination, answer these 5 questions and nominate 5 others blogs for the Liebster Award

1) What do you like about blogging?

2) What is your favorite book?

3) What is your favorite quote?

4) What is your favorite form of social media?

5) If you were President or Prime Minster for a day which 3 laws would you enact? 

Enjoy!!

 

 

 

Supporting Grenfell too

For the first time in many years I joined a demo a couple of weeks ago. In my pre-wheelchair days I had been a frequent attendee at CND, Anti-Apartheid and other marches. Having seen the overtly aggressive actions from police increase over the years, I was scared to be part of a demo again. Further damage to my spine could leave me paralysed. That was a risk I was not willing to take.

But as I read the postings on Facebook for the anti-DUP demo and saw friends were going I decided to join them. My anger as a gay woman at the lack of LGBT equality, was one reason. However it was my experiences as a Nurse supporting women from Northern Ireland who had come to the UK for termination of pregnancy, that was my deciding factor.

Forcing a woman who had been the victim of rape or incest (or both) to continue with a pregnancy is beyond cruel. Maybe carrying a child to term would be harmful for other reasons. The psychological damage these women carry throughout their lives isolates them. They can never speak of the wounds they bear. These women need support, not condemnation and religious intolerance.

To force them to travel to another part of the UK and then pay for the operation they quite rightly seek, is wrong. Why should where a woman lives determine if she pays for a operation she needs?

So I found my bright red pro-choice t-shirt and set off the join my friends. I even managed to park in the first disabled bay I found at the back of Westminster Abbey. A minor miracle, that bode well for my day.

I soon found the friend I’d arranged to wheel with. Jay introduced me to one of her friends and another woman who was on her own. We soon swapped stories and found common threads in our lives. 

The biggest obstacle I faced all day? No ramps onto the grass at Parliament Square! Why? Are wheelchair users banned from the grass? It may be difficult for us to sit on, but don’t separate us out. Luckily my friends helped me get on to the grass and back to the pavement again. 

The speeches at the beginning were inspiring. I was so pleased that supporters of the Grenfell Tower victims were able to join us. That was making our women’s only march mixed gender, unusual but absolutely right at this time. The march was also trans-inclusive, which was another positive action by the organisers. I’m always pleased when the TEFs (trans exclusionist feminists) don’t get to inflict their displaced irrationalism on other women.

Officially the wheelchair users were to be at the front of the march,  but as we moved up towards Downing Street, I soon found myself cocooned in the center of a mass of women. I felt fully included and safe. On Theresa May’s door step the chanting begun to increase. “No racist, sexist, anti gay, no DUP no way.” “Torys, Torys, Torys, out, out out”, we continued. Then came the chants for Corbyn. Never in all my 40 years of demonstrations have I been amongst a group of protesters who not only wanted the current government out of office, but knew exactly who they wanted as the next PM. 

As I watched Jeremy Corbyn speak at Glastonbury a few hours later, with that enormous crowd supporting and cheering him, I felt the same solidarity that I had been part of in Whitehall. I cannot recall a time I have ever known this strength of positive feeling towards a party leader in the UK.

Slowly, but very surely the political tide is turning. The anger about Grenfell, and the untold stories yet to come. The chaos of the Brexit negotiations and this poison-pact with the DUP will all unravel soon.

Decent, safe homes, a woman’s right to choose, a society that does not discriminate, these are values for all. We will continue to demonstrate until they are achieved. 

This post first appeared on my Huffington Post blog.

 

Jared O’Mara MP

The Speaker of the House of Commons ruled recently that male MPs need not wear a tie when in the Chamber. There has been much fuss made in various newspapers about this. As well as ill-informed comments by MPs themselves. Many correspondents to letters pages seem to regard it as a lowering of standards. 

The House of Commons is a strange and at times, eccentric place of work, with its old traditions and rules. All MPs still have a ribbon attached to their coat hook for hanging a sword on. Less than 20 years ago MPs still had a wear a collapsable top hat if they wanted to raise a point of order. MPs are also never referred to in the Chamber by their own name. My MP, for instance, is the Honourable Member for  Vauxhall. MPs who are members of the Privy Council or have a knighthood are addressed as Right Honourable. 

Such old style forms of address hardly sit well within a 21st century House of Commons. Many new MPs find themselves baffled by the procedures and customs. They do not make for a welcoming work environment. Some have likened it to going to Public School for the first time or even arriving at Hogwarts. 

The Speaker, John Bercow gave no specific reason for his decision about ties other than it was for him as Speaker to decide what was “seemly and proper”. He continued saying that in his view; “a tie was no longer an essential part of business attire”.

But there is another story behind this announcement. That of making a “Reasonable Adjustment” at work for disabled people, as required by the Equality Act 2010. The new Labour MP for Sheffield Hallam, Jared 0’Mara has cerebral palsy and is unable to do up buttons on a shirt or fasten a tie.  He had previously indicated that he may need to ask for such an adjustment. 

John Bercow, like any manager in a workplace has had to make a sensible and pragmatic decision. And not wanting to cause embarrassment to a new MP who has a disability, he made a general announcement. Would it have been better to give a more specific reason? I think not. As disabled people we do not what to be  called out for our differences. But we do need employers to make suitable and reasonable adjustments so we can do our jobs easily and well. 

This is precisely what John Bercow has done. He has also handled his decision with tact and sensitivity. I wish all employers would behave in the same way. 

Many City firms, still require their female staff to wear skirts and high heeled shoes to work. This sexist and outdated attitude should be long gone. It was at the end of the 1960’s that the then Speaker Dr Horace King decreed that women could wear trousers in the House of Commons.

Surely this too, is a change that all employers should be making? Women should have choice in what they wear to work.

The law requires reasonable adjustments for disabled people. I can see no reason to restrict dress codes just to those of us that need them, they should be equally valid for all. 

This post first appeared in my Blog on the Huffington Post UK site, where more of my writing can be found.

The Phone Call

I have been fighting for almost 18 months to get my care package reinstated. According to UK law, if someone moves from one area to another their care package should automatically move with them. This gives people the security of knowing that they will not have to wait for a re-assessment and will continue to get enough care. 

The Care Act 2014 states that the new Local Authority has to continue with a care package for a period of at least 3 months before reviewing. So when I knew I was going to move to my current flat, I made the required phone calls. As I was moving from one Labour run Council to another I expected the process to be simple. How wrong I was.

Whilst my phone calls were logged in my new borough I was told that they they needed three months notice of a move. I was also told that they expected my old borough to pay for my care for the first three months. 

When moving within social housing as I was, it is unusual to get a months notice as I did. Very often a move has to be done within 7-14 days. My old borough, quite rightly, refused to pay for my care once I moved. 

Several very unhelpful phone calls happened. During one, I was told that as I had chosen to move I had no automatic entitlement to care. Explaining that I had moved area after almost 9 years of waiting to get an adapted flat didn’t seem to count. Eventually I was seen by an OT – occupational therapist and a social worker. The OT arranged to get my bathroom adaptations carried out, eventually. Click here and here for the saga.

The SW – social worker demanded lots of letters from all the medical professionals I had seen recently. Then I was told be they wouldn’t accept anything from my current GP as I was still registered with the GP where I used to live. They did not accept evidence from an out of borough GP. I was unable to change GP at that time as I was waiting for spinal surgery and needed continuity of care. 

I did give them permission to contact that GP, which they very reluctantly said they would do. I was horrified to get an email saying my GP informed them I did not need care. When I visited my GP she told me that no such request had been made and no such letter sent. She actually wrote a letter whilst I was with her completely supporting my need for a care package. The letter also stated no previous letter had been sent.

The SW used the “evidence” of the letter she claimed my GP had sent to refuse me care. I asked for a copy of that letter. Of course, I was refused it. I was told I had to ask my GP for a copy. Yes, a copy of a letter that did not exist! How bizarre is that.

Eventually I decided to contact my MP to ask her for help. She was quite horrified at what had happened to me. We made arrangements to meet so I could give her all my documents. Unfortunately shortly afterwards she suffered a family bereavement, so work on my case was delayed. 

Once my MP was back at work she was soon in contact with the Director of Social Services. I now have an email accepting I’m entitled to care. 

But when? How soon? I was contacted in April by another SW. I supplied him with my new GP details and the latest letter I had from my Orthopaedic team. Then heard nothing. 

My MP contacted the Director of Social Services again once she was re-elected. I had another email today – accepting they have done nothing since the April phone call. A response my MP has described as “pathetic!”  Evidently the letter is “too out of date” to be used. I only see that consultant yearly!

I also had a phone call from yet another SW today. It came when I had a neighbour here and I asked the SW to call back at a specified time. Surprisingly she agreed. It is that call which is the headline of this blog.

I was actually shocked that she called back at the agreed time. She seemed professional and wanted to hear what I had to say. But as the call progressed, I became more and more anxious. She constantly cross-questioned why I needed certain treatments. She couldn’t seen to understand that the surgery I had last year won’t enable me to walk around. (It was done to relive a trapped nerve and had had no impact on my back, neck or shoulder pain.) I knew this would be the case and have come to terms with that.

But, every time I’m questioned about why I can’t have this treatment or that operation it puts both my mind and body in a spin. Should I stop accepting how I am? What if there is some miracle surgery that will “cure” me? Have I not seen the right Consultants? I’m left feeling dazed and confused. It has taken me a long time – almost 10 years to get to the acceptance I now have.

I’ve learnt to live with my limitations and mange to enjoy what I can do rather than pining for what will never be possible. What right does anyone have to disrupt my psychological equilibrium? 

My physical reaction from the phone call was all the effects and symptoms of IBS. Several hours later I’m still feeling sick and my stomach continues to gripe. I’m just glad I don’t have to go out tomorrow. 

The next stage of getting assessed depends on the letter I get after I see my spinal consultant on Friday. Officially I shouldn’t even be seen much later this year. But because of my circumstances the surgeon has made an exception and agreed to see me. 

Update to follow……………

 

Heather Morgan

Guest Post from Heather

When I was first drafting my “Ways to Survive Disability” I sent a copy to my friend Heather in Canada. We have in fact never met, but know each other through family connections. Instead of amending what I had written Heather, with her different take on life, came up with these words of wisdom. I am honoured that she has allowed me to share them. 

Heather Morgan lives with her husband and teenage children in Canada, where she writes, coaches and looks for joy in the everyday. She has lived with disability in herself and her children her whole life, and recently joined the ranks of wheelchair users everywhere. Heather now blogs at: poweredbylove

1. Find ways to (re)connect. Friends and family are important to everyone, but when disability strikes it can make it difficult sometimes to connect in the ways you are used to. This in turn can lead to feelings of isolation and increase issues with depression. This can be particularly difficult if your disability affects your energy levels, but finding new and creative ways to connect becomes really important at this point, for you and those who care about you. My husband and I have always enjoyed being outdoors and exercising together, but that’s almost impossible for me now on my own steam. However, he found a charity that offers special running strollers for adults with a disability to use in road races. So in May, he and I will be out racing a 10k race together.

2. Be willing to try old things in new ways. For example, I used to love cooking, and now energy is at a premium, so I don’t get to do much cooking anymore. But I’m discovering how much I still enjoy putting salads together for lunch for the family, even if it’s out of a kit from the store. 

3. Find ways to nurture gratitude. There are a lot of new frustrations available for the newly disabled. If you’re anything like me you may have never noticed just how inaccessible the area you live is before now. Not to mention all the things you never had to think twice about doing that are now challenging or even out of the question. But it turns out that cultivating gratitude in the midst of this space can be really helpful for our mental health. I’m back at it again after a brief lapse, and am trying to look for at least three things a day to be grateful for, which I then write down in a journal before I head to bed.

4. Practice being honest. I don’t just mean about whether you ate the last cookie or invited your partner’s family over next Tuesday. I mean practice being honest about yourself – with yourself and others. Maybe it’s just me, but I’ve never been particularly honest with myself about how my body was feeling. Tired? It didn’t matter, I still had things to do. Sore? That wasn’t going to get the dinner cooked. Hungry? Thirsty? I’ll get to that as soon as I can. But now not only is it important that I’m honest with myself about how I’m feeling and what I need, I also have to learn to be honest with those around me. 

5. You are not your disability. When we first get diagnosed with a disability it can rapidly become all we think about, and all we spend our time on. That’s ok for a time, but before too long you’re going to want to remind yourself of who you are. Although “what you did” may or may not be available for you to do anymore, depending on the nature of your disability, “who you are” – your values, your passions – those will always be with you. Finding ways to be “you” on a daily or weekly basis will go a long way to helping you make the transition to your new way of life.

 

Tania had given me permission to reboot this great post. Please do visit her blog – there are some brilliant posts to read.

Spoonie Authors Network

spoonieconfession

Forgive me, Father, for I have synonymed. Oh, wait, I’m not Catholic or Anglican (both traditions have the sacrament of Confession), I’m Jewish. So, that sort of confession isn’t appropriate. Yet, confession is an appropriate term for where I’m at with being a spoonie. The evidence is there in report cards and in what has been going on in my physical health for the past few years. It’s not a question of confessing to the world at large, but to myself. I spent most of my life suppressing some aspects of who I am, and not recognizing others. Swimming in the Nile, as the saying goes. It is not a healthy place.

The first realization I had to deal with was my gender identity. So, I did that, transitioned, and was overall much more content. The other aspect of myself was not as easy to discern. It was only after…

View original post 913 more words

But some wonderful outcomes

I have been involved in helping to run election campaigns since I was 14. Then I was helping at the constituency office in Okehampton, Devon where I went to school. For many years I was an organiser and then Election Agent. I worked in by-elections as well as General and European elections. I’ve seen a lot in 45 years.

But this election was unlike any other I’ve ever been involved in. 

For the first time, Social media had a huge impact. I was running two different twitter accounts. I was also re-tweeting for our next door candidate, who is a personal friend. I could have spent my whole time doing nothing but tweeting everyday. There were also two Facebook pages to maintain and update. I also had a very sharp learning curve in how to use Instagram. I still don’t really understand why the memes I posted had so much impact. 

The next thing that was so different was the diametrically opposite campaign strategies of the two main party leaders. Theresa May, seemed very reluctant to meet any of the public. Possibly a sensible strategy, bearing in mind how badly she came over when people tried to talk to her. Jeremy Corbyn was the opposite, and welcomed meeting voters and listening to what they had to say. 

But the most noticeable difference to me was the lack of political mud slinging from Jeremy’s team. It made a refreshing change and was clearly popular with the electorate. 

For many people it wasn’t ‘All about Brexit’ as Theresa May wanted it to be.  Talking to people on the doorstep, what excited people were the Labour manifesto pledges. The memes about them were some of the most popular images shared on social media.  

What was also new in this election, particularly in the Labour Party was the involvement of Momentum, the campaigning organisation set up to back Jeremy Corbyn’s leadership bids. Momentum ran an excellent social media campaign. They also attracted large numbers of young people to help with phone banking. Some of the training sessions were run by staffers from Bernie Sanders’ campaign team.

Two other organisations, Collective Voice and EL4JC, produced wonderful literature and memorable short videos. The endorsement from actors, film makers and grime artists ensured the enthusiasm of the younger generation.

They also surprised the pollsters by going out and voting.

For me as a disabled person, I was able to be involved in campaigning from my bed. Many other disabled people helped the campaign by being able to phone-bank from the comfort of their own homes. There will always be room for more inclusion, but we have made a good start.

Two Labour candidates with disabilities won seats, and a third came within 1,200 votes of winning. Marie Rimmer who retained her seat of St Helens South and Whiston has a hearing impairment.  She was Shadow Minister for Disabled People before the election. So Labour now has three MPs with declared disabilities. 

Stephen Lloyd is the only Liberal Democrat MP with a declared disability. He has had a hearing impairment since childhood. Two Conservative MPs, Paul Maynard and Robert Halfon both have cerebral palsy. I have been unable to discover any other MPs who have disabilities. By having less than 1% of MPs with a disability, Westminster is clearly not representative of the 19% of disabled people in the UK. 

It is often difficult for people with a disability to get accepted as political candidates, either for local councils or for Parliament. For a few years the Access to Elected Office Fund was able to give financial support to disabled candidates to cover extra expenses. But this fund closed in 2015, just four years after its launch. It leaves prospective MPs or councillors who are disabled with no additional funding support. 

One previous parliamentary candidate was unable to stand during the recent campaign. Emily Brothers who has both vision and hearing impairments, was a Labour candidate in 2015. She was financially supported and able to campaign effectively. This time with no funding available she felt unable to be a candidate.

Mary Griffiths Clarke, was another Labour candidate with a disability. She  has ME. She stood in a Tory/Labour marginal in Afron, Wales. Mary was beaten by just 92 votes. I’m sure the extra money would have supported her and enabled her to win. It is disgraceful that the last Tory government closed the AEO Fund. I would expect any future Labour government to restore it as soon as possible. Disabled people have a right to enter public life and should be assisted to do so.

The two new Labour MPs, Marsha de Cordova, who is visually impaired and Jared O’Mara who has cerebral palsy both had historic victories.

Marsha won Battersea, overturning a Tory majority of almost 8,000. She ousted Jane Ellison, a Treasury Minister, in an amazing campaign. She had hundreds of young people, many from Momentum, door-knocking and delivering leaflets for her. This, together with Marsha’s own work ethic, activist background and focus on local issues assured her victory. I’m proud that I played a part, albeit a small one. 

Jared’s victory over Nick Clegg was considered one of the most dramatic results of election night. He again was a local activist and campaigner, who like Marsha had worked for disability charities. I know little of his campaign, but he must have got the vote of every student in the city who wanted revenge on Nick Clegg. A former Liberal Democrat leader, he dramatically u-turned on his party’s policy of free university tuition, once in coalition. 

I wish the our new Labour MPs well and will be keeping my posters and t shirts ready for when this current coalition of chaos implodes.

This blog was also posted on the Huffington Post 

 

 

Logos.jpgSome more useful ideas

6 Use or Loose

Use your previous skills to enhance what you can still do. I gave one example in the previous blog post about being organised and thinking ahead. Those were two skills I leant and enhanced throughout a career managing nursing homes and charities. I gained computer skills over 30 years ago and am still learning. I’ve taught others to use social media, basic spreadsheet knowledge and how to manage databases, all from my bed. 

My carers keep everything tidy and my bedroom has all my computer kit and books to hand. People are taken aback at first, but soon understand when I explain that lying in bed reduces my pain levels and enables me to do more.

7 It’s your pain

Only you know what you can and can’t do without being in pain. It’s your pain – no one else knows how bad it is. Pain is telling you something, it’s telling your body to stop. Listen to your body, learn what triggers your pain or muscle spasms. When your body says stop, take notice. 

Please, don’t be bullied by professionals who tell you differently or that you are not trying hard enough. It’s your body – not theirs. I know there is a theory of breaking though a pain barrier – but you are not an elite athlete!  Treat yourself and your body carefully. 

8 Learn who to ignore

Find a way of dealing with the idiots who will ask you stupid questions. For me this is difficult, I have a low idiot tolerance level. I’m also very good at thinking up an answer 5 minutes after I’ve turned away from the idiot in question. I’ve had senior doctors ask why I’m using a wheelchair, judt because they didn’t look at my notes properly. 

I have several different medical conditions which mean I need to use my chair all of the time. When I’m asked what’s wrong with me by a non-medical person, I usually quote the two main reasons, then say, ‘But there’s several others too…….’ the look on the other person’s face usually means I’m kind to them and say nothing more. However I have friends who will respond to that question with ‘………and why have you got such bad dress sense?’ It works for them, I’m not so brave. 

9 Ask for help

One thing that disabled people know lots about is disability. Whether it’s dealing with pain, how understanding how your local Social Services work or getting a good wheelchair. Through years of experience and learning the hard way – we have lots of knowledge and most of us are really happy to share it. It’s the same when choosing a GP or knowing which care agency actually cares. Don’t be afraid to ask. If we know we will tell you and if we don’t know the answer, we’ll probably know someone who will. 

Know the websites to use, Benefits and Work, for everything you need to know about DLA, ESA, PIP and more. Turn to Us, Benefits eligibility checker and great advice on where to get more help. Radar, the best site for finding out your rights.

10 Be an expert

Understand your condition and the effects it has on your body. Understand your medications too and learn about interactions. For some people being part a local group with a national organisation is brilliant. My friend Val who has MS really benefits from going to her local group and being part of the MS Society. You may just want to get a regular newsletter or magazine and know there is a helpline if you need it.

Know your legal rights – if you live in the U.K. – the Equality Act 2010 is the main legislation to understand. If you are in the US it’s the Americans with Disabilities Act 1990. 

If you are able, campaign in some way to change thinking and attitudes. I do and through that I’ve met a great bunch of people and we support each other too.

‘Twas on a Monday Morning……………..

This wonderful Flanders and Swann song seems to sum up everything that happened with actually getting my bathroom works completed!

I agreed with the contractor to have a Monday morning start as the work should only take three days. The bathroom was cleared of storage units, cleaning stuff and the cats litter tray.  I had woken early and although I wasn’t yet dressed, I was respectable enough for the contractors to arrive between 8 & 8.30am. By 9am I was feeling rather cross and phoned their office. I was told that I should have had a phone call on Friday. The Friday call should have explained that there had been a delay on a previous job and the workmen would not get to me till Tuesday. I was not happy. Later that day I was told the men would arrive ‘first thing’ on Wednesday. This was not looking good.

First thing on Wednesday morphed into lunch time. Eventually 2 men finally put in an  appearance. One spoke some English, the other very little. They began by laying a protective cover down over the walk-way into the bathroom. This was great for preventing dirt being traipsed everywhere. The cats however, were not impressed. Their paws stuck to the plastic. They spent the next few days walking around the edges. 

Soon the bathroom floor was ripped up and the preparation work began. Thursday morning started with the new radiator being installed. The cupboards were fixed to the wall. Finally my shower seat was moved and attached at the correct height. For some reason this last task turned out to be quite difficult. The adjustable legs were different lengths and one had to have a couple of inches sawn off. Eventually the seat was low enough for me to sit safely on it. 

The next job was sealing the holes between the floor and the skirting board. Then a special concrete-type underlay could put down. This stuff stank! The smell was very like that disgusting smell you get in male urinals when they have not been cleaned properly. Fresh air spray failed to get rid of the pungent aroma!

I landed up burning a heavily scented candle for several days. 

Whilst the underlay was being smoothed into place the loo had to be removed. Even after the loo was re-fixed we couldn’t use the bathroom until the floor had finished drying. Inconvenient to say the least!

The final task was the measuring of the floor area so that the flooring could be laid on Friday. When the sub-contractor arrived to fix the flooring in place, he told me that the previous days measurements were incorrect. What! How? He didn’t know – not his job!  The flooring he’d brought with him was not just not big enough to fit my bathroom. I was furious. Demanding, through clenched teeth, as to why he couldn’t just get some more that was the correct size? The answer to that was that the supplier was too far away for him to collect it. He was also booked into another job that afternoon. Also he didn’t work on weekends! I told him I expected him back first thing on Monday morning, to which he muttered something about a another booking. 

I tried to calm down before I phoned the main contractors. They did not understand why the subcontractor had left my flat. Thirty minutes later a very apologetic boss was on the phone to me. He was grovelling. He knew his firm had got things badly wrong. He told me there would be no charge for the radiator, which would save me some money. But also informed me that the fitter would not be back until Wednesday morning. I was glad about saving the money, but very annoyed I wouldn’t be having a shower until the following week.

I cannot easily have a stand-up wash, so had to resort to using baby wipes and dry shampoo to feel half decent. I chose not to go out anywhere either as I felt so self-conscious about not being able to have a shower.

I couldn’t wait for Wednesday to come! I was so relieved when the fitter arrived with the correct amount of flooring. Thankfully, the disgusting aroma had almost disappeared. The flooring was laid quickly and well. All I had to do now was wait 24 hours for the sealant to fully dry. 

When Thursday morning came, it was wonderful to be able to have a shower after 8 days without one! Having the warm water cascading over my body was bliss. Having clean hair was such a relief too. I was even able to shower alone, just needing help to get from the shower to my wheelchair. 

The other joy of getting the bathroom done was being able go get rid of the shower curtains I hated so much. I now have beautiful leafy curtains which tone well with the darker flecked flooring, deliberately chosen to reduce the visibility of marks or hair dye. Now that the flooring is correctly laid the shower water drains away quickly, longer leaving the floor like an ice rink. 

I’m so happy and relieved to have a beautiful almost new bathroom, which finally looks good and is safe to use.

 

 

 

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