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Posts tagged ‘pain’

5 More Ways to Survive being Disabled

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.

How (not) to chose a carer – Part 1

Finding the right carer can be like crossing a minefield

I have needed carers to help me for over 10 years now and these are some of the things I’ve learnt.

If you chose to use an Agency you will be able to meet with a number of different companies to see which one is able to best meet your needs.

However, if your care is organised by Social Workers, you or you family will have little choice as to which Agency provides your care needs as this is decided for you by your LA (Local Authority). But most importantly, you do still have a choice over who comes into your home.

If you find a carer disrespectful or rude or they do not understand your needs or provide poor care, you have a right to refuse to have that carer back again.

Because care work is so poorly paid a high percentage of agency carers are from outside the UK. My experience is that many do not either speak or understand sufficient English to be able to meet my needs. And if I’m struggling to work with them, heaven help anyone who is deaf or has impaired vision or speech!

I have spent almost all of my working life employing Nurses and carers from ethnically diverse backgrounds – so I’m well used to making sure care staff can be easily understood by their colleagues and the residents they care for. Also I often had a good number of applicants for each job. However Agencies today are usually so pressured to provide a service that they take on staff whose English is not as good as it should be.

Carers are in our homes for a short fixed time only and they always seem to be rushing to get to their next client. An Agency I used recently sent me a carer who was good – but every time she got delayed at a previous client’s house she missed my visit – leaving me with no breakfast and unable to take the pills I need to have with food. My pain levels increased dramatically, impacting on the rest of my day. After 3 mornings of this – I had no alternative but to ask the agency not to send me that carer again and made the decision to go back to directly employing someone.

The example I’ve just used is fairly extreme, but often it’s been really simple things that carers have struggled with – not burning food – making sure food is cooked properly & served on a hot plate or bowl. Making sure I have the right cutlery. Washing up is a very basic task, but yet I’ve often found that I’ve need to check that dishes and cutlery are washed properly.

I’ve had carers who have refused to do any domestic work, ie cleaning or hoovering, even if that has been part of the work they are contracted to do. I’ve had a carer pull a Dyson so roughly that she has broken the hose – and then denied she had done so – the agency refused to take responsibility for the damage, and whilst I was still arguing with their insurers – the agency lost the contact with the borough I lived in and went bust – so I ended up very out of pocket.

For a time one London Borough where I lived paid a company to undertake shopping at Tesco’s for clients. For the 3 months I used them I don’t think I ever got the right order! One day when my flat front door and step were being painted the delivery guy walked onto the step and left a large black boot print on my carpet and slammed my front door so hard he made a hole in the wall of my hall! As soon as I realised I called the agency & the Council – the agency were less than helpful and I only got a very small settlement.

There are good agency carers, but I no know it can take time for me to find the carer who can best meet my needs. I have used 6 or 7 agencies so far and only one sent me a great carer from the outset, with others I went though at between 5 or 8 people to get someone who was able to care for me properly.

This is the first of two blog posts on this topic.

Part 2 will follow shortly.

A Trip to the Countryside

 

Sadly I didn’t get to ride the horses!

As readers of my blog will know I’ve had several eye surgeries in the last few years. This year I wanted to be free from hospitals and operations. However, my body had other ideas! 

Whilst my mobility is compromised by both my spinal arthritis and my poor lung function, I can usually stand and walk a few steps without too much pain. I take regular analgesia and my pain levels are usually well managed. But my balance is poor and a few days after a fall in September last year, I experienced a severe pain in my right leg, I was unable to put it to the ground without excruciating pain and soon I had the pain when I was sitting or lying down.

Fortunately I was seeing a Rheumatologist as a follow up after a steroid injection into my left wrist (for pain due to having to try and carry trays of from my kitchen), this was also remedied by getting extra care hours, so I didn’t need to carry stuff. When I went to what should have been my discharge appointment, the Consultant agreed to send me for an MRI. I waited in vain for the appointment, but he was a locum consultant and hadn’t done the referral correctly. Several phone calls later I finally got my scan. When the result came back it was as I had expected, I had a trapped nerve. However this was complicated by a cyst between two of my lower vertebrae L4/L5. 

According to what I understand is now NHS standard protocol, the next step should have been to refer me to the local MSK (Musculo-Skeletal) Triage Team. This is a group of specially trained physiotherapists who decide on treatment according to various treatment pathways. See here for an example of how this works.

I knew that the only way my pain would be resolved would be by surgery and there was no way I wanted a referral to my local hospital. The last time I was an inpatient there following cancer surgery I got a hospital acquired infection which caused wound healing failure and meant that my shoulder wound became so deep that my scapular was visible. The wound took over 15 months to heal. I also knew that weeks waiting for appointments to professionals who couldn’t help me would have a negative impact on my health and well being. More concerning, I had also began to experience peripheral neuropathy, ie numbness in my feet and I knew I needed treatment quickly. This also was affecting my balance, which made any walking really scary. 

One of the advantages of working as a Nurse (my former profession) is that you get to know an awful lot of medics, one in particular came to mind. She had worked for many years at RNOH in Stanmore, a world renowned orthopaedic hospital that specialises in complex cases. I was well aware that I would qualify for treatment there and discovered that I could get referred directly by my Rheumatologist. That should have been a simple letter and the sending of my MRI scan, but in the way of many NHS referrals there were several hiccups, letters not being done, the scan getting lost between the two hospitals, in all it took 3 months before I was finally seen at a wonderful state of the art building in central London.

As soon as I met my consultant I knew I had the best person possible. I had a scan just 30 minutes before I saw him, I had my medical history taken by his Registrar and underwent a rather painful examination, (it took me three days of complete bedrest to recover) the Registrar was very apologetic, but I knew he needed to examine me fully. Then I got to meet my consultant, he immediately pulled the scan up on his computer screen, and took both me and my partner Eve through the images so I could understand exactly what had happened and why I was in so much pain. 

We agreed a treatment plan, I was to be admitted as a day-case so that my cyst could be aspirated to see if that would lessen my symptoms, this would be done by guided imagery and I would also be put on the waiting list for full spinal surgery. 

I quickly got the appointment for my day surgery. I was admitted into a lovely private room, and was taken down to the imaging department where I was placed on my front, given some wonderful short acting anaesthetic and the next thing I knew I was being wheeled back to my room. A few hours later my lovely friend drove us back home. Over the next few days I noticed some reduction in my pain, but that wasn’t sustained, so I was thrilled when I got a surgery date for four weeks later. The date could not come soon enough!

As preparation for my surgery and to prevent MRSA I had to use special body and hair wash, nose ointment and some ghastly flavoured mouthwash! I decided to drive myself to the hospital as there was lots of available car parking and I knew I had friends who could drive me home again. I was admitted to a main ward and promised a side ward after my operation. I had previously been sexually assaulted when I was on an NHS ward by a male patient and am now very nervous of being in mixed sex wards. Whilst there were separate male and female bays, they were adjacent and I did not feel safe.  

The staff were incredibly understanding of this, and one of the Senior Nurses, who was on the hospital safeguarding panel, asked if she could talk about my situation, anonymously, to the panel. I agreed and I hope the way staff supported me would help others who had may have had similar experiences.  

The RNOH could be described as somewhat ramshackle. It is set in 112 acres of green belt to the north of London. It was first built as a hospital just before the WW1 when it became an emergency hospital for the military and also began to house disabled soldiers in 1918. In the 1930’s the hospital became known as the leading centre for the treatment of Polio and TB. Come WW2, lots of Nissan huts were erected to house civilian patients and war casualties. Many of those huts are still being used, with long interconnecting weatherproofed corridors. Some of the corridors are really steep due to the contours of the surrounding land. When I went to theatre my bed was pulled on an electric truck operated by a porter, even the wheelchairs the porters use have electrical assistance. I had been well advised not to have my surgery there in the winter. It looks as if the latest lot of plans for redeveloping the hospital may finally come to fruition, I really do hope so.

Despite the difficulties of the building, everywhere was spotlessly clean and the care I received was wonderful. Firstly the ward I was on had enough staff to care for the patients, a rarity in today’s NHS. All the staff I met treated me well, they understood and accepted my limitations and gave me good personal care. Pain relief was offered regularly and every nurse who came into my room checked my pain score. There were no issues about giving me my own top-up Diazepam for the muscle cramps I sometimes get, in other hospitals I’ve had major difficulties about getting it prescribed and given. The whole ethos of the ward was that everyone cared for the patients. Domestic staff as well as Nurses of all grades were friendly and professional. The one downsidewas the food. The menu was well designed, but the food was not good quality and it was very repetitive, with the same choices each day. I was glad of the extra treats I had taken with me. 

My surgery went exactly to plan, although it took longer than expected due to the difficulty of removing all of the cyst. I spent my first post-operative night in HDU, which is routine for RNOH surgical patients. My previous HDU experience had not been good, to say the least, so I was slightly apprehensive. But I need not have been, my care was great, I was given enough analgesia, and I did manage to get some sleep. The next day I was back on the ward and in my lovely side room. Although the room was small, I always had easy access to my wheelchair, even though staff had to bring it from another area on the ward, and then had to manoeuvre my bed & open both doors. I never had to wait to use the loo and staff were always on hand to support me when moving from bed to chair. 

I saw both Physiotherapists and Occupational Therapists. The Physio was great, and she didn’t push me to do things I couldn’t do, again a new experience, I’ve previously felt very bullied by some Physios. Even the Social Worker came to try and get my Local Authority to sort out my Care Package, this will be the subject of another blog post.

My partner came to see me each day and our Rabbi came to visit too, which was wonderful. By 5 days post-op I was ready to go home. Our Rabbi’s husband came with my partner to drive my car home, the journey was not too painful, other than going over the dreaded speed bumps along our road. I was really glad to come home and see my lovely cats, who seemed pleased to see me. But my biggest treat was a takeaway from our favourite Chinese accompanied by a large glass of wine. Desert was some scrumptious champagne truffles Eve had brought for me.

I’m writing this two days later, my pain levels are reducing, I’ve even reduced my pain killers, but I still can’t spend much time in my wheelchair. But it’s so great to be home. 

 

Wanted: Kitchen Fairy

I really don’t like doing housework! Even when I was able bodied I employed someone to clean for me. This was for two reasons, when working long days and often juggling two jobs, I just didn’t have the time or energy, and I was happy to employ another woman who was usually in need of earning the cash cash.

Now even if I wanted too, cleaning hoovering and dusting is just impossible for me either in terms of pain levels, energy and shortness of breath. My cleaner only comes weekly, and sometimes she misses a week, if floors are not cleaned or surfaces dusted, I often don’t notice. When I’m not wearing my contact lenses I can’t see well enough to notice either! Most of my visitors know me well enough not to comment if they spot something amiss.

The only person who does remark on things is my cousin Polly, who at 76 threatens to clean for me if I lived nearer her! Knowing full well that there is no way I would let her! I’ve only just persuaded Polly to stop cleaning for a 93 year old whose clutter was just proving too much to cope with.

The worst household task for me after cooking, is washing up. I have a great little tabletop dishwasher, which is a great boon, but it still needs emptying and stacking. As I don’t generate enough washing up to use it daily, I land up with a pile of dishes waiting to washed. Dealing with them, as well as cleaning the kitchen surfaces and the trays I use (my flat is too small for a dining table) is a task I always put off until I run out of cutlery or plates.

I would rather be writing this blog, answering emails, going genealogy research, catching up up TV, almost anything than having to sort out the kitchen!

As I write this there is a pile of dishes in soak ready for me to deal with.

When I had a carer who also did housework this was no problem, she did washing up whenever she came in. Great, no problems. But my current carer only does care and I can’t get my new cleaner to come in twice a week and some weeks she doesn’t come at all so I’m back to sorting out my own washing up.

It’s not really the time issue, but the pain factor that gets me. My kitchen is not adapted in any way, other than having lever taps. So I either have to stand, a sure way of getting breakthrough pain, or perch on a stool, meaning stretching and shoulder pain. As well as hoping my grip works and I don’t drop anything.

I know what the pain will be, I know I’ll get breathless, I know I’ll be exhausted at the end of doing it and land up lying down in a heap. Hence the procrastination.

But, in the absence of a fairy, even a good elf would do, until someone invents a kitchen robot or droid, I just have to do it myself.

No more excuses, the kitchen awaits!

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