Tag Archives: chronic illness

Health update – Gallstones

Around 6 -7 weeks ago I started experiencing worsening stomach pain that didn’t feel like my usual crohns related stomach pain. After a week of the pain getting slowly worse and very nearly giving in and going to A&E I decided to book an urgent appointment with a GP.

The GP was really great, he was really thorough, listened attentively to all of my concerns and my long history before performing an examination and deciding it seemed to be a gall bladder or liver issue. Due to the extreme nature of my pain and the fact that I had a rapid heart rate and a slight temperature, he decided to send me into the surgical admission unit at a big hospital.

They did some bloods and checked me over and agreed that it was very likely to be gallstones and sent me home with a referal for an urgent ultrasound. I got the ultrasound a few days later and a nurse called me that afternoon to tell me I have a nice big stone and need surgery to remove It along with the gall bladder. I was told I would see a surgeon within a couple of weeks to discuss surgery and decide the best approach for me.

Unfortunately a couple of weeks later I experienced really severe pain and it was decided by me and my family that I needed to try and go to the hospital. We attended A&E and after a very long night I was put on the list for the surgeons to review me. They told me that I definitely need my gallbladder removed but that because of my other health conditions they didn’t feel that it would be possible to do the surgery during that admission. The plan was supposed to be that I would remain there for a couple of days and get good pain management from the pain team, and that I would only leave once the pain was under control, but unfortunately this was over ridden and I was sent home as soon as the pain team had spoken to me, but under the impression that my appointment had been speed up and I wouldn’t have to wait much longer.

However I still dont have an appointment. I phoned the nurse line yesterday and was told it’s normal, and that although my appointment had been expedited, they hadn’t actually made the appointment yet. I was advised to wait another week and then call the appointment booking team and ask them. I was also told that I am not yet on the surgical waiting list, despite being given the impression that I would be on it from the date I was referred to the surgeon as seeing the surgeon is just a formality, and the list is quite long so it was very unlikely I would have been called up for surgery before I was the surgeon in out-patient clinic.

Unfortunately I am still having a hard time with pain. I have been told that most people with gall stones experience intermittent pain and flare ups with breaks in between them but unfortunately my pain is constant and persistent. I am currently on very high levels of prom relief that I have worked out with my GP, but the pain still frequently breaks through those meds. It is having a massive impact on my quality of life, I am unable to sleep more than a few hours at a time without waking up for pain meds, and I am finding even the most basic tasks very difficult. My appetite is all over the place and it is very difficult to juggle the dietary restrictions for the crohns and coeliac along with the suggested changes for gallstones. I am finding though that for me, it doesn’t seem to be high fat foods that are causing the issues, and it seems much more random, I am keeping a food and symptom diary to help keep track.

I have been told several times by GPs and the hospital staff that I should be a priority, so I am hoping that this will be followed through, I will definitely let them know how much this is impacting my quality of life and the rest of my health issues, and point out that I am at a disadvantage to other patients, because most people have the option of going to A&E and having them consider doing the surgery urgently if things get too much whereas it has been made clear this is not an option for me, also the size of my stone means I am in severe and constant pain and needing a lot more pain meds than I am comfortable taking long term.

Its never nice getting a new diagnosis and finding out you need surgery again, but looking back over the last year or so a lot of my symptoms and the things I have been struggling with could be explained by the gallstones. If this is the case, I may feel a significant improvement in my overall wellbeing after my surgery and although I am trying not to get my hopes uo too high, I can’t deny its a little exciting to think some of my symptoms might actually have a fix. Until then I am just resting as much as I can and using all the tools I can to look after my mental well being as much as possible to.

The burden of proving you’re “Disabled enough”

Something I don’t think people who aren’t chronically ill/disabled understand is the constant burden of having to prove you are sick or disabled enough for the various types of help that you need to be able to exist in society.

Many people assume that if you are sick or disabled, you will get the help you need without too much fanfare, I have even heard people say that if you don’t get a particular type of help, that must mean you aren’t sick/disabled enough, as they assume that anyone who qualifies will get it automatically, but this simply isn’t the case.

There are so many types of help disabled people have to apply for, and for all of them the burden is on us to prove we are “disabled enough” to qualify, and if for any reason the people in charge of the scheme or benefit don’t agree with you, you just don’t get awarded.

Just recently I have experienced this. I won’t name the company, but I have been a holder of a document that helps you access facilities when you book or attend things such as gigs, festivals, amusement parks and more. It is well recognised and a lot of companies trust it, so a lot of places will as for it to prove you are eligible for the help you are asking for.

I have been using this document for six years. When you apply, you tell them what help you need, and they look at the application and your evidence, and decide if they agree. They then put symbols on the document to let venues etc know what help you require.

The first time I applied, I got all the symbols I asked for, without any issues. When the card needed renewing, I sent the same evidence again, as it was still in date, but this time they said they couldn’t issue one of the symbols, which was to show that I needed a carer. I contacted them and they told me their policies had changed, and that I needed a more specific letter proving I needed help while out that was more than a friend would normally provide.

I got a letter from my GP stating that I need help with injections, and that I need help safely getting out in emergencies, communicating and sometimes with other medicines and other miscellaneous tasks that enable me to go out safely. The company agreed that this was a higher need than they would expect a friend to manage, and gave me the carer symbol.

This month, it needed renewing again. I sent off the documents, including the letter stating I need significant help while out, including needing someone to inject me if I am unable to do it. I also added newer documents from my neurologist that showed my diagnoses, and a copy of my oxygen prescription. Again they came back and said they could not issue the carer symbol. I have emailed back and I am waiting for a response.

Keep in mind the evidence I gave is the evidence they specifically asked me for. There is a charge for the document, and, if I was to go back to my GP and get another statement of fact letter then I would be charged for that too. That isn’t something I can afford every time the document needs to be renewed.

Without the carer symbol, I have to pay for someone to come with me to anything I do, I no longer go out alone unless there is no choice (i.e when I go to hospital via ambulance transport). I cannot go to a gig, or the cinema, or a museum, or a normal doctors appointment by myself any more. The last time I tried it ended in extreme pain and being unable to cope. This places yet another financial and emotional burden on me. If I can’t afford to pay for someone to come with me, then I can’t afford to go at all.

I totally understand that things like this document, and benefits and blue badges etc need to be protected. If they are given to anyone who asks for one, they will loose credibility, but, as a disabled person, it is very hard to keep proving yourself, especially if the goal posts keep being moved. Each time I have applied to renew this document they have changed the requirements for evidence, making it impossible to keep up with and forcing me to pay for more documents I will probably only use once.

This isn’t an isolated incident, so many companies and government schemes do this. They say it’s to make sure the right people get help, and I am sure thats part of it, but the reality is that people who need the help are also being shut out. I cannot afford to keep paying for more evidence, so I am shut out of so many things that are supposed to help me.

Then there’s the emotional toll of constantly feeling like you aren’t “disabled enough” every time you get turned down. It makes you feel like you don’t deserve the support, like there’s some sort of competition and you lost, and this is a constant part of the lives of disabled people.

Another thing people don’t realise is that this doesn’t just happen to people with temporary illnesses or disabilities. I have multiple permanent illnesses and even though I have provided evidence of this I am still expected to show new evidence whenever these companies decide. Again, I understand the need to make sure systems aren’t being taken advantage of, and there are some illnesses that get better, or where treatment will minimise symptoms and function can be improved, but if you have been told by your doctors that this is not possible for you, then this should be taken into account when applying for support.

There are many disabled people in financial or social hardship because they were turned down for help that they desperately need, and that needs to be addressed. We need a much better balance between safe guarding these facilities for those that need them, while also making sure that it doesn’t become inaccessible for those who truly need it. The stress and emotional turmoil of these systems has caused me to seriously question applying for many of them and I know I am not alone in this.

What are dynamic disabilities?

If you spend a lot of time on the internet and particularly looking at chronic illness and disability social media, you may have seen the term “dynamic disability”.

Dynamic disability is a relatively new term used to describe disabilities that change from month to month, week to week, day to day or even hour to hour. It covers a wide range of disabilities and illnesses with fluctuating and changing symptoms.

Despite what many people may believe, there aren’t actually many disabilities or illnesses that remain the same 100% of the time. The vast majority of people with disabilities will experience changes in their symptoms and therefore their capabilities on a fairly regular basis.

This is why someone with a disability may be able to do an activity on a particular day, but be unable to do the same activity the next day or the next week.

For many of us, what we can do depends on how fatigued we are, how much pain we are in, how our medications are working, how much sleep we have had, if we have been able to eat or drink enough , environmental factors such as the temperature and so many other variables. We know it can be confusing if you see us doing an activity with a friend or other loved one, and then a couple of days later say we can’t do the same activity with you. This is not personal, and we aren’t avoiding you. The reality is our symptoms can genuinely change day by day, and we have no control over it.

Dynamic disabilities and fluctuating symptoms are also why you might see us using different mobility aids from day to day or even hour to hour. Depending on my symptoms, where I am going, my mode of transport, how much other equipment I have (such as my oxygen tanks) and how much help from others I have available, I will either use a wheelchair, a rollator, crutches or, (rarely ) a folding walking stick. When out with my rollator or wheelchair, I will have my folded walking stick in a bag, so that if I need to walk a short distance because my wheelchair or rollator won’t fit somewhere, I have support. This has resulted in a lot of very confused looks when I have come out of a toilet with my walking stick and sat in my wheelchair.

One of the best things you can do for someone with dynamic disabilities is believe them if they say they can’t do something on a certain day, and be flexible with your plans. If you’ve arranged to go to the cinema and they don’t feel up to it, ask them if they would like it if you came over and did a movie day instead or if you’re supposed to go out to eat, offer to cook or pick up take out. Sometimes they might feel so sick that even hanging out at home feels like too much, but it lets them know you’re there for them in whatever way they need you to, and they might welcome the company. I definitely wish some of the people in my life would be more willing to just hang out with me at home rather than going out all the time, as I don’t often feel up to big nights (or even days) out, but still want to spend time with the people I love.