2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

 

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

 

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

 

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

 

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

 

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

 

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

 

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

Democracy in action part 2

“Illness is neither an indulgence for which 

people have to pay nor an offence for which they should be penalised

but a misfortune, the cost of which should

be shared by the community”

Aneurin Bevan – Founder of the NHS

 


Things have moved quite quickly since part one of this post so I will try and update you all the best that I can.


The hospital had asked me to email them with all the details regarding my mother’s case six days after I had sent those first three tweets (detailed in the last post). The following day I wrote a strongly worded email to the hospital explaining that the longer my mum waited for the operation the more permanent nerve damage she would suffer and the less improvement there would be from the operation.


By lunchtime the following day I was yet to even receive an acknowledgement email from the hospital. I thought that this was very bad manners on their behalf and took to twitter again to express my dissatisfaction. Let me be clear I wasn’t expecting a resolution to my complaint but it is standard practice to at least acknowledge an email. It had taken them six days to respond I was not going to allow them a further six days to acknowledge my complaint.


As I started having a nosey at what had been tweeted about that day I noticed a lot of the content was about Prime Ministers Question Time (#pmqs ) and the NHS waiting lists. In parliament that day an MP had raised on behalf of his / her constituent the fact that a patient was waiting 33 weeks for surgery. A lot of MPs that I follow were calling on the government to take action. 


My husband and I normally watch PMQs as he almost always does a late shift on a Wednesday, this week however he had gone in early. Without him being at home I had completely forgotten what day it was and that PMQs would be on. As MPs and people I follow were discussing the NHS I thought this would be as good a time as any to try and bring my mother’s case into the spotlight.

 

I tweeted several MPs one retweeted me that was Labours Diane Abbott, which I was extremely grateful for. I continued to tweet about the hospital and contacting any MPs I could think of that may be interested. This is just a small sample of the tweets;

 

thankyou we can’t get or interested in my mum’s case. She is a carer for my disabled sister

 

pls rtwt why has XXXX got a 12 month wait for spinal surgery? Mum needs surgery as she is a carer.

 

could you e mail me re that? She has legal right under constitution to be treated within 18 weeks xxxxxxx@parliament.uk

 

 

 If you look at my twitter account you can see how busy I was firing off tweets to anyone I could think of. Suddenly the MP for Exeter was interested and he mentioned the NHS Constitution, something I profess I had never heard of before.

 

Ben Bradshaw’s tweet was like a light at the end of a long dark tunnel. I emailed him immediately explaining what was happening with regards to my mum’s case and then I started googling the NHS constitution. 

 

The constitution was a real eye opener it explained the 18 week time limit from referral from your GP to the time you get treatment via your consultant. The hospital could no longer have the advantage with my complaint as now I knew about the constitution and as they say knowledge is power.

 

As soon as I received a tweet from Ben Bradshaw MP the hospital contacted me via twitter, wanting to know who I had emailed and when it had been sent. I replied giving them the email address they supplied me with and confirming yet again that I had emailed them over 24 hours previously. Within 2 hours I had an email responding to my complaint. Funny how these things happen isn’t it?

 

I responded to their email by informing them that I now had several MPs involved / interested in my mum’s case and all future correspondence from themselves would be forwarded to those MP’s. This seemed to have the desired effect as they then emailed me back informing me as I now had an MP involved my complaint would have to be dealt with via their formal complaint procedure. I never asked for it to be dealt with in any way other than formally. Strange isn’t it that now they knew that I had knowledge of the NHS Constitution (which explained the 18 week rule and the formal complaint procedure) and now that Ben Bradshaw was interested that they suddenly started taking my complaint a lot more seriously. I know I sound cynical but it had taken them 6 days to respond to me on social media the previous week, yet kick up a bit of fuss, name and shame them on Twitter and suddenly they spring into action. 

 

My mum’s condition has taken a turn for the worse and last week whilst staying at the caravan she spent the whole week in an awful lot of pain. Whilst at the van she received a phone call from the hospital asking her to attend an appointment with her neurologist. My mother pointed out to the caller that she hadn’t seen her neurologist for several months and that her case was now being dealt with by a neurosurgeon as she was waiting for an operation. The caller stated that they would look into this and my mum thought no more about it.

 

During the same week I received an email from the PALS department who are handling the complaint asking for my mother to fill in a medical records release form. To deal with her complaint they needed to have my mother’s medical records so that they could see what I had been informing them of was true. I informed them that mum would be returning from holiday shortly and once she had she would complete the necessary paperwork to allow them access.

 

My parents returned from their stay at the van last Thursday and found a letter from the hospital waiting for them. The hospital had written to my mum inviting her in for a CT scan on her spine next month. Things appear to be moving now.

 

My mum had been informed by her neurosurgeon in June that before her operation could take place a CT scan of her spine would be performed so that he would have an up to date picture of what was going on before her surgery. She was told that this would take place only a few weeks before the surgery as any earlier than that and the situation could change before the operation. It would be a waste of resources to complete a CT scan now and then make her wait a year for surgery as she would require another one.

 

Although nothing has officially been confirmed we are hopeful that mums surgery will take place in August. Mum is not exactly thrilled, she is struggling to come to terms with the fact that she needs spinal surgery and that it will be a long road to recovery. I understand her fear and reluctance, the surgery as with any surgery comes with risks – paralysis, loss of bladder / bowel control but the risks she faces with surgery are the same essentially that she faces in the long term if she refuses surgery such is the seriousness of her condition. Its very hard to see he this scared and I feel like I have forced the issue. She admits herself she has been living in denial about it but deep down she knows the operation must go ahead.

 

The hospital have 25 days from my complaint going formal to respond in full. So I am waiting to hear what they have to say for themselves. We have still been unable to get my mums MP interested in her case using twitter. In the next week I will email him directly and see if this provokes a response. I hope that it is not party politics that is preventing him getting involved and just an oversight such as he hasn’t seen the tweets or has been away on holiday. Jeremy Hunt The Secretary of State for Health is also yet to respond but I should imagine his twitter feed is filled with stories like my mothers and plenty of abuse seeing as though he belongs to a political party that seems hellbent on destroying the NHS and the welfare state.

 

Yesterday I received a letter on  official The House Of Commons paper Ben Bradshaw MP had written to me to inform me that as neither my mother or myself were in his constituency he was bound by parliamentary rules not to get involved any further in our case. This was quite a blow as I had hoped that he would be able to apply pressure and ask questions of the hospital. It seems democracy is only in action if its in the interest of your MPs party. Ben Bradshaw is a Labour Party MP, the party that founded the NHS, both mine and my mothers MPs belong to the Conservative Party. The Conservative Party aren’t great supporters of the NHS and are deliberately running it into the ground with the aide of the Liberal Democrats so they can sell it off to their chums in private health care.

 

Although my mum’s case seems to have moved forward I am feeling a little despondent. Despite all my hard work the scandal at my mum’s hospital is still going unnoticed by those in power. Those who are interested hands are tied due to us not being constituents and there are many other people languishing on NHS waiting lists because they don’t know have the knowledge to challenge their local hospital or are not social media savvy and are unaware of how to make a fuss. 

 

The trolls who contacted me on Twitter – yes I attracted trolls, due to complaining about NHS waiting times, said I was wrong to highlight the case of one unfortunate person when the NHS had done so much for so many others. My aim was not just to improve the lot of my mother but to draw attention to all patients of this hospital who were being made to wait more than 18 weeks for treatment. Its a hollow victory for me if it is only my mother who benefits from this.

 

I hope that through my blog and my own facebook page I have educated others about the NHS Constitution and how to complain to your local hospital should you be facing a wait of more than 18 weeks. That will be my legacy.

 

NHS Constitution

 

The Handbook to the NHS Constitution

 

How do I find out who my MP is?