Back Pain Sucks

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor’s. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

 

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor’s office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor’s surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

 

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

 

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

 

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

 

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

 

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.
Back pain sucks, it really, really sucks.

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The things you do for love

So last week was crazy busy, despite Jay and stating we were going to have a lazy week whilst he was on holiday.

 

As I wrote last week I had a surprise visit to hospital on the Friday for a caffeine infusion which I will write about more next week as the star of this week’s blog post has to be my husband Jay.

 

Back in May 2016 I set up a gofundme page to raise money to buy a new wheelchair and a power trike attachment so I could go off road and go out with my dogs on Woodbury Common, something I have been unable to do since 2008. As hubby and I were chatting one day trying to think up ways we could raise money, as like most people we don’t have a spare £5,000 lying around, I suggested that he should get his back waxed. He agreed immediately, now this is the man that needed gas and air for his travel vaccinations, who screamed the place down many years ago when he had his legs waxed for charity, so I was a little shocked when he said yes.

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Hubby is hairy and it has never bothered me. If you had asked me before we met if I liked hairy men I would have said no. To be honest the only time his hair has bothered me is when it’s left all over the shower tray every morning looking like we have showered a black Labrador. It wasn’t until I saw the first video clip I realised how hairy he is, I suppose over 20 years I have just got used to it.

 

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Within a few days hubby had it all organised and the sponsorship money was flooding in. Through doing this he has raised over £1100 I am so proud of him not just because of how much money he has raised but the pain he went through doing it.

 

Imogen, a very dear friend of ours videoed the back waxing for us. Unfortunately the complete version of the video is only available on my The Myasthenia Kid Facebook Page however we have managed to get the following videos onto YouTube. I also need to say a very big thank you to Abbie Wilson who did the back waxing in her own time and free of charge. That was so very generous of you Abbie and we really appreciate it. I need to warn you that the language in the video’s is a little fruity so it’s probably best you watch it with the sound down whilst children are present.

I just need to point out we are not a charity but a gofundme campaign. Apologies for my husband getting it wrong, I think the nerves kicked in.

 

 

It’s not too late to donate, we have set ourselves the challenge of a year to raise the money. If you would like to donate please use this link gofundme .

The things you do for love and a decent wheelchair, what next?

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He has told me skydiving and abseiling are definitely out.

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Another Hospital Adventure Part Two

Last week I wrote about just the first 24 hours of my three-day hospital stay, if you missed it you can find it Here.. This week’s blog post will be about the remaining two days.

Day two

I woke up happy in the knowledge that Jay would be coming to visit me, we had feared had we not been able to arrange a sitter for the dogs he wouldn’t have been able to visit (thank you I.C).

 

Quite early in the morning one of my neurologists came to see me to give me the MRI scan results (which were negative) and to advise me that an anaesthetist would be coming to speak to me, he told me I needed to convince her to do the epidural blood patch. I should have realised then that she wasn’t on-board with it but it went over my head. He also discussed occipital nerve blocks (injections in the base of my skull) to see if that made any difference. If they didn’t it was more proof that the leak was real, he told me for the moment we wouldn’t be doing the caffeine infusion if I was getting a blood patch the following day.

 

Within about 30-40 minutes the anaesthetist popped around to have a chat. We spoke about my various medical conditions, the pro’s and cons of an epidural blood patch, the procedure itself and the protocols for recovery. The meeting seemed very positive and it felt like it was a go. Halfway through the meeting Jay turned up and he was able to give his input on how incapacitated I have been etc.

 

After she left we decided to have a coffee downstairs in the restaurant but as we were about to leave the neurologist came to see us and asked how the meeting had gone. We told him she had gone away to do some research ( and I had pointed her towards CSF Leak Association ), she would get back to me and that we both felt the meeting had gone well. He then asked me to go back to the ward as he wanted to do the occipital nerve block injections.

 

He did say the usual “short scratch coming” which at the moment still feels like the understatement of the year. I pride myself on my high pain threshold after having a lumbar puncture when the local anaesthetic had worn off, putting up with the most horrendous bowel adhesion pain for 6 months before they operated. Nothing prepared me for how painful this was. The doctor felt around the base of my skull asking which part was most painful and then injected local anaesthetic into that area. I was injected 4 times, the worst bit on the following three was knowing how sore number one had been. The pain made me sweat almost immediately and tears pricked my eyes. I have very colourful language and was mindful that we were on the ward, so managed to limit myself to the odd “Jesus Christ” and “Shit the bed”. I have no idea where shit the bed came from it’s not something I use ever but it helped.

 

The feeling of numbness was exceptionally weird, the back of my head felt like it was missing and the tips of my ears went numb. I was determined to go and have a coffee (and a fag to be honest) so immediately after the injections were administered I left the ward. As I had spent so much time lying flat I knew I would get an hour or so upright. My days are spent lying down so I can get the odd hour here and there to get stuff like having a shower done. It’s not a great way to live but it works for me at the moment and you have to play with the cards you have been dealt. At the moment I have an extraordinary bad hand but I am just waiting for a fresh deal.

 

Jay could only spend a few hours with me and they raced by. The times when I had visitors (my parents visited every day) went the quickest. The ward I was in was classed as short stay, essentially you were there until they could get you a bed on a proper ward, so patients were always changing over. By Thursday afternoon I was the only original patient left from those I was in with on Wednesday.

 

In the afternoon the anaesthetist returned, she caught me wheeling myself back from the toilet. Her opening statement was “You look better after those nerve blocks”. I didn’t look better, I didn’t look any better than I had done that morning. The only difference was the back of my head was completely numb. My head was still pounding every time I was upright. I knew with her opening gambit the news wasn’t going to be good.

 

She had decided that she wasn’t going to do the patch, she blamed the fact I had EDS (something I hate because ever doctor who refuses to treat me does this despite all the literature telling them the only difference in surgical approach is the closing of wounds. I find it incredibly lazy and insulting). To be fair I don’t really remember much of the conversation as I was crying so hard. She told me she thought the best thing I could do was be referred to pain management. She seemed to think that this was the perfect solution, me lying down for the rest of my life stoned off my bonce on pain meds.

 

I cried on and off for the rest of the afternoon. It was a mixture of anger and frustration, I knew I couldn’t tell Jay at this point because he had left thinking that the blood patch was being done the following day and that potentially I would be fixed. I rang my mum, who talked me out of self discharging, I can say truthfully if she hadn’t had been on the end of the phone I would have just packed up my belongings and got a taxi. I was so frustrated with it all that I couldn’t see the point in being separated from the dogs and my husband any longer. My parents drove across the city to come to see me and to give me the medical information they had printed off about CSF leaks and epidural blood patches.

 

I didn’t see any other doctor after the news that the blood patch wasn’t going ahead. I want to think it was because they were as frustrated as I was although the thought has crossed my mind that they had heard about me losing my shit with the catering staff and were in hiding.

 

I rang Jamie later in the evening to tell him that the epidural blood patch would not be going ahead. I managed to hold it together and not cry whilst I was talking to him. We were both exceptionally angry as we had been sold the hospital stay on the premise that I would have a blood patch, that I could possibly get better. He had lost a week’s holiday pay taking the time off. It was such a blow to both of us that we are still angry about it. I should never have been admitted if they didn’t have the anaesthetist on-board.

 

Day Three

I woke up in agony with my back and spent the usual amount of time begging for pain relief. I wish I was allowed to administer my own medications in hospital but as they are controlled drugs I am not allowed. So I am at the mercy of the nurses and how busy they are. My head was also really bad as I had spent too much time upright the previous day. I couldn’t lift my head of the pillow without intense stabbing pains. My eyes were also extremely sensitive to light so from 6am I was wearing sunglasses.

 

My back never copes with hospital beds and always causes me lots of problems. Quite often it will take me a good 48-72 hours to get my pain levels back under control after a hospital visit, which is simply ridiculous. In hospital I had been confined to my bed as I couldn’t sit in the chair as my head wouldn’t allow this. At home I can lie down on the sofa or on my bed and the changing surfaces stops my back getting too angry. However today I could quite happily rip my spine and surrounding muscles out as I am in agony with muscles that are in spasm. Pain makes me emotional and tired, which is not a good combination. Any tears in front of a doctor and you are immediately labelled as depressed.

 

I saw a different neurologist first thing in the morning who advised me that the caffeine infusion would be going ahead. In my notes the pharmacist had left a message informing the doctors I would need an ECG before the infusion. To which this doctor said I didn’t. Without a definite yes or no on the ECG my treatment was delayed further. All I was concerned about at this point was getting home and I was getting frustrated that no one was taking any action. By 10am I was washed, dressed and packed, that is how serious I was about leaving. I was also beyond exhausted, although I had been sleeping whilst in the hospital I was constantly being woken up by people being moved into the bay. My bed was right beside the door and no matter how careful the porters were my bed ended up being bashed by the door as they wheeled a bed through. It would hit the end of my bed so hard that the whole thing would shake. People were in and out constantly so my no matter what time of the day or night it was my bed was being knocked.

 

Between approximately 10-11am I saw my usual neurologist who apologised for the change in plan, he was as surprised as I was that the anaesthetist had refused to do the epidural blood patch. He assured me that he and the consultant would come up with a plan. (I have now been home two weeks and have yet to have had any correspondence with them.I know things move slowly in the NHS and I am one of many patients, it’s just life is particularly tough at the moment). The plan for today was that I would have an ECG and as long as that was normal they would go ahead with the caffeine infusion.

 

Our bay was being looked after by the dream team today and I am not being sarcastic. The two nurses we had and the health care assistants were brilliant, really funny, got stuff done quickly and were in and out all the time. In the two days prior to this we were lucky if we saw anyone at all for hours at a stretch. One of the nurses was the lovely lady who had come to my rescue on the first night when I had the issue with food (Cottage pie, Fish pie anyone?) and we had a male nurse as well. I don’t know who was more unlucky, me or the male nurse as he was the one going to be doing my ECG. If you have never had an ECG, they basically stick a bunch of sticky pads on your body in various places. It can be a bit embarrassing for all involved if you have a large chest (that’s me) as a lot of the stickers have to go around and under your bosom. Years ago I had a very embarrassed male nurse putting the stickers on and he could barely bring himself to touch my breasts to put the stickers underneath. Now when I have an ECG I grab the bull by the horns and grab them myself cupping them out-of-the-way to spare both our blushes.

 

As expected my ECG was normal and half an hour later the caffeine infusion was started. I was warned prior to it starting that if I got palpitations, felt weird etc I was to call for a nurse. I really didn’t think I would feel anything as I drink so much coffee these days as caffeine boosts CSF production. Some days the coffee helps a lot and other days it makes no difference at all. The infusion would take about two hours to run and after that I would be free to leave the hospital. It was a very long two hours!

 

Just as the IV was started lunch was served to our bay. The catering staff out did themselves, managing to give 5 people the wrong lunches and I ended up without one. When we tried to get the catering assistant to sort it out, she left the bay without speaking. We ended up calling a nurse to then get hold of the catering supervisor to sort the cock-up out. I eventually got my vegan curry, however the lady across from me who suffered from Coeliac disease couldn’t get a guarantee from the catering staff that her meal was indeed gluten-free. I on the other hand never ever want to eat curry again.

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Initially I felt nothing as the drip started. It was only on the 30-40 minute mark I started to feel strange. I felt like every muscle in my body was twitching or vibrating and I felt really buzzy. I started to get palpitations which I thought were more to do with postprandial hypotension or reactive hypoglycemia. I did call for a nurse and my observations were taken, my blood pressure was just bizarre 121/66 ( a wide pulse pressure of 55 should be nearer 30) and a pulse of around 75. So there was no need for concern and the infusion could continue.

 

As time went on I noticed that my head pain had reduced and I was now able to sit up without grabbing at my head. This effect lasted for 5 hours, believe me to be headache free for 5 hours was absolute bliss. It also reduced my head pain for the following 5 days. By the time the infusion finished I was sat up and no longer had to lie down. I had my sunglasses off because my eyes weren’t light sensitive and they remained that way for the  following 5 days.

 

I managed to leave hospital at around 3:30pm with a diagnosis in writing of Spontaneous Intracranial hypo-tension (SIH) or in layman’s terms a cerebrospinal fluid leak. I suppose even though I hated every minute of being in hospital at least I have that diagnosis, which has been backed up by the occipital nerve block injections and the results of the caffeine infusion.

 

We are still raising money via Help me walk the dogs again for a new wheelchair and power trike attachment so I am able to get up to Woodbury Common and walk the dogs again. We have now raised £1400 of the £5000 we want to raise. Hubby is getting his back waxed on 31st July and as you can see from the picture he is pretty hairy! You can sponsor him via my go fund me campaign. The waxing is being recorded and it will be released on YouTube and via my blog.

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Many thanks

Rach

 

Another Hospital Adventure part one

The last time I was in hospital was 2014, which you can read about in these two posts Emergency admission part one and Emergency Admission Part Two . This time I wasn’t at my local hospital but one an hours drive away. I was admitted on the premise there would be an MRI and a blood patch later in the week. I am sad to report the blood patch didn’t happen. I am back to square one on the headache front. I will explain more later in next week’s post.

 

As usual my hospital stay gives me much to blog about. I really wish it didn’t. I really wish that every doctor that you come into contact with didn’t question my  EDS diagnosis, even once I have explained my family history, I am still expected to show how bendy I am like some sort of performing seal. Why is it that the doctors that diagnose you tell you never to do your party tricks because it ruins your joints and essentially makes them more lax yet every other doctor you meet wants you to show them? It makes no sense to me. I may actually just take the photos in from my blog post in – from May 2014 .

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The admission came quickly, I was really wasn’t expecting to be admitted so soon. It was exactly a week from my first meeting with my neurologists. Those of you who have followed my blog for some time will know my feelings about neurologists. These two at the moment appear to be different, as with any health professional I never let my guard down. I haven’t seen them enough to pass a definitive judgement but so far so good.

 

I had been having a truly awful day on Tuesday 28th June, the pain had been crippling all day. It had been bad all week but this was on a whole new level. Jay had to come home from work to look after me, as I could barely manage to get myself the short distance between my bedroom and the bathroom. I have no idea what time the phone rang but out of the blue the registrar rang, Jay initially took the call but then handed the phone to me. He asked if I could get to the hospital for 9am the following morning. I had to be there that early so that I could get a bed as I would be in the hospital system before other demands for beds were made. The plan was to give me an MRI scan on Thursday and do an epidural blood patch on the Friday.

 

I can’t lie I was excited, the chances of my headache being ended was around 80% with the administration of an epidural blood patch. The end was finally in sight and I would be able to get my life back. I also knew there was a possibility that it wouldn’t work and I had to try to prepare myself for that outcome to. Unfortunately I didn’t prepare myself enough for the outcome of never receiving the blood patch, I am angry at myself for letting my guard done.

 

I had the usual problems on arriving at the hospital, mainly the staff in the small unit just wouldn’t listen to me. I tried to tell them that my veins are an utter nightmare however they were more interesting in chatting amongst themselves about a colleague being proposed to at the Glastonbury Festival and that this was now all over the internet. I tried not to get annoyed as I had no idea how long I would be remaining on the unit and would be requiring their help to get me to the toilet etc. I had to ask twice to be moved to a bed where I could lie down despite my notes stating what I was being admitted for and the “ward” containing 6 beds of which only 2 were occupied.

My team of doctors saw me quite quickly and discussed that they would probably be able to get me a MRI scan that day. Which was a relief as it could have meant that I would get to leave much earlier than envisaged. Always a bonus and I absolutely loath lying around in a flood lit, noisy hospital ward. Since the leak started most days I have to wear sunglasses (even indoors) and I am hyper sensitive to noise (it seems to echo about in my ears which isn’t fab when hubby is suffering from the worst hay fever he’s had in years and is sneezing all the time, obviously that can’t be helped). Hospital stays always make me much worse due to the over stimulation and the stress of it all.

 

My MRI was booked for 3pm and was the longest scan I have ever had being brain and the whole of my spine. No sign of a leak could be found which isn’t that uncommon (my neurologists certainly weren’t expecting to see it) but I did get the diagnosis of reversed cervical lordosis, which means the natural curve in my neck has gone and is now reversed.

Unfortunately (I seem to like using this word) the staff in the small unit weren’t happy that the MRI had been booked in the mobile unit. From family members having MRI’s booked in there I knew this meant one of them would have to push me up the very steep hill to get me there. On finding out that they would have to do it, one of them stood at the end of my bed, hands on his hips shrieking “where is your husband?” when I replied “in Exmouth” he really wasn’t happy

“Is it a power chair or manual?”

“Manual” I thought that answer was quite obvious as they had pushed me to the toilet twice, however on the second time I asked to go to the loo I was asked “Can’t you walk?”. Again the answer was obvious but clearly not to them.

“I will have to push you then” He didn’t exactly sound overjoyed at the prospect but as I had no control over where I was getting my MRI, I wasn’t going to be made to feel guilty.

 

The staff members on this unit were one of the worst I have encountered. Usually you get one shit member of staff but the others are good. After moving my wheelchair and walking stick out-of-the-way one asked me if I was fully mobile on completing the clerking document. When I said no she looked perplexed, I gestured to the wheelchair as what little patience I had left was ebbing away. It was another case of just not “looking sick” enough. She didn’t seem to believe me when I told I self catheterised or that I had problems with swallowing…….*face palm*.

 

I got moved to the ward and never saw a nurse or healthcare assistant until gone 5pm and that was then only because I was kicking off about the food. A catering assistant came to the end of my bed and explained no food had been ordered for me earlier in the day…which the small unit I had stayed in could have done, so all he could offer me was a selection of sandwiches. That would have been fine, had they not all contained meat. English was the gentleman’s second language, I tried to explain I was vegetarian, he didn’t get it. I told him I didn’t eat flesh, no he didn’t understand that either. I said I don’t eat animals……He then offered me that well-known vegetarian speciality of cottage pie.

 

I did lose it slightly and told him if he didn’t understand what I was talking about to get me someone who did. He quickly brought a nurse back with him who offered me another vegetarian delicacy….fish pie. I again explained I was vegetarian (I am actually now vegan about 80% of the time but knowing this was probably going to be difficult had decided I would be vegetarian whilst in their care) and said I would eat a cheese sandwich. The catering assistant then told the nurse the kitchen was closed, she wouldn’t take no for an answer and made him check on the next ward over for a cheese sandwich. One was located and I got to eat, bless the nurse though as she came back at the end of her shift, apologised for the problem and told me she would be looking after me tomorrow so any problems give her a shout.

 

In between me actually getting something to eat and the nurse coming back, one of the patient’s visitors had decided I was racist and that I was just being difficult for not eating meat. He told me “after all it’s not the hospital’s problem you’re a fussy eater”. He chuntered on for a bit, getting other patients to chime in and in the end I had to tell him that he either shut up or I  would call someone into remove him. I pointed out that as a lifelong vegetarian I was entitled to be catered for and asking to speak to the catering assistants manager is not an act of racism. It has become a bit of a joke in our house now as when Jay asks me if I want something to eat he offers me cottage pie or fish pie and when I refuse them, he mutters racist under his breath. It is the first time in my life anyone has ever accused me of that.

 

This had all happened in less than 24 hours, so to say I was stressed would be a minor understatement. As usual I had problems getting my medications but this time it was due to the fact that my prescriptions hadn’t been written on my chart. The nurse told me I couldn’t have the medications hadn’t been prescribed for me, to which I replied yes they have my gp prescribed them. I know I am a smart Alec but I really needed oramorph at the time and I was also 90 minutes into having no painkillers in my system which hadn’t helped my mood.

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As this post is going to be a long one I have decided to split it into two. Really long blog posts irritate me as a reader and I imagine many of you are the same.

So just to recap I didn’t receive an epidural blood patch whilst I was in hospital, despite being told that was what I was coming in for.

I am still having to spend the majority of my days lying flat and I am in medical limbo whilst I await the plan that my neurologists are putting together.

In next week’s blog post I will explain why the epidural blood patch didn’t happen and what other mayhem I caused.

We are still fund raising for my new wheelchair and power trike attachment and you can find details here – go fund me – help me walk the dogs again

 

Limbo

So I find myself in much the same position as I was last week. I am still having the orthostatic headaches, neck pain, back pain and the constant taste of salt in my mouth. Just for added variety I came down with a UTI last week which knocked me for six and I have been sleeping a lot ever since.

 

My gp has increased my salt tablets (600mgs) to 10 a day and this has helped a little. Meaning I can spread longer periods sat up than before but everyday I have a headache that increases as the day goes on.

 

Thankfully hubby had an appointment with the gp this morning (we share the same one),  he explained how awful the last few weeks have been for me and how this is impacting his anxiety. He doesn’t know how I am when he is working and he is worried that I may collapse again, injuring myself. The gp has now decided that I need the referral and that is being done this week. I have to contact the gp on Friday to let him know how things are going.
So that is the current state of play, I am still in limbo and have no idea how long I will have to wait to get the epidural blood patch or if indeed the consultant will agree to it.

My impending hospital stay

It is crazy the amount of stuff you have to organise for a routine hospital admission. I am starting to think there would be a lot less work involved if it was an emergency but know my husband couldn’t take the stress involved.

I like lists I can’t help it. There is nothing like the satisfaction of crossing off the jobs as they are completed. It’s a remnant from a previous life, you know the one where I contributed to society, felt like I was actually doing something instead of treading water whilst waiting for new symptoms to arrive. It seems a long time ago now but my organising skills do come in handy. Hubby has a list also, written by me to keep him occupied and out of trouble whilst I am away.
I have printed off my prescription list, ( a double side of A4 paper), printed out my symptoms a  list for both EDS and PoTs, as last time I was admitted the Doctor processing me simply had no clue. I have bought new pyjamas, a dressing gown and socks as my feet are always cold. Now I am trying to work out a way of shoehorning it all in to my overnight bag. If it was just simply overnight I could manage but this is in all likely hood be a stay from Tuesday to Friday. By the time you read this on Thursday morning I could a) be one day away from escaping or b) the staff have pissed me off so much I have discharged myself. It will be fun either way.
At least this time I know how to play the game. I am back on the locked dementia ward and in a side room. No side room and I am going home pure and simple. That may sound ungrateful but just a few hours exposed to the noise of the ward will send me into a downward spiral of complete bed rest for a few weeks. I can’t deal with loud continuous noise any more. When in hospital my condition should be stable and not allowed to deteriorate.
This time I know I am well within my rights to refuse tests / treatment and will not be intimidated by an aggressive night nurse who demands to check me for bedsores. Do you remember the one who last time removed the bed-clothes and tried to undress me before explaining what she was doing? I am looking forward to seeing her again because this time I will take her name and make a formal complaint if she tries anything remotely similar.
People keep telling me to enjoy the rest whilst I am in hospital but there will be no rest. The constant ambient noise, lighting and series of tests that I will be put through will give me no rest. I will get home exhausted and that will be followed by a collapse a few days later. By collapse I mean unable to get out of bed for days on end. Since I have got sick I can not deal with the outside world. There is too much stimuli for my senses, I become overloaded. I can cope at home because the stimuli do not change and I can take myself off to bed any time I like.
In hospital my mobility issues will hit me hard. I can walk short distances albeit unsteadily at times, however in hospital I will have to walk further than I normally would to the bathroom. When you drink 6-7 litres a day that’s 20+ bathroom trips. Even if the difference between getting to the bathroom at home and getting to the bathroom in hospital is only a metre by the end of the day it would be difference of an additional 40 metres walked. This will trigger bursitis in my hips and pain in my knees and back. When you aren’t sick you don’t think about things like these. Even if I manage to wheel myself in my chair, it’s still extra pressure on my shoulders which will mean at some point one or both will sublux or dislocate. There is no such thing as rest for me in hospital, I know they meant well but it just wont happen.
I will also be dealing with constant anxiety firstly about being in hospital surrounded by people I wouldn’t trust as far as I could throw them due to previous experiences but I will also be worrying about hubby and the dogs. I know how hard my absence hits hubby and the mutts. At least this time we are better prepared and have made sure he has friends coming around to see him. Otherwise he is liable to retreat into his man cave, sitting in his underwear eating junk food to comfort himself. As he suffers with anxiety and depression he does need the support of his friends and I am so grateful he has such a good bunch of people to look out for him. I will be ok I will just miss them all.

Part of my fear of hospital stays is like anyone else’s a fear of the unknown. I have no idea what the doctors have planned for me and I find the lack of control disturbing. I have so very little control over my life, I depend on others for everything, when what little autonomy I do have is removed I react badly. I really don’t want tests that I have previously vetoed being sprung on me such as tilt table tests. I have a sneaking suspicion that they want to do one but the answer will still be a flat no as the last one in February 2014 made my health decline so rapidly I was stuck in bed for a month afterwards. As I was left to deal with this alone (as in no medical care) I am loath to ever put myself in that position again.

I know I need to go to hospital, I know I am lucky that I live in a country where (for the time being) its free at the point of use. I am lucky that I have doctors who are willing to try to get answers when I have been fobbed off and forgotten by so many others previously. I just don’t feel that lucky today the day before I go in! 

So hopefully after my stay, if there is a bed available and I am well enough I should be able to regale you with my stories of what tests I had and how I was treated by the medical staff. Fingers crossed it is better than last time!

 

After all the stress on Tuesday morning when I rang at 8am I was told they were struggling to find me a bed. By 2pm my hospital stay was cancelled. Now I have to go back on the waiting list for another available slot.

10 things I have learnt since becoming chronically sick

This is just a quick post as I am still recovering from my birthday celebrations just over a week ago. I have spent most of the last week sleeping and then this weekend I have suffered a horrific migraine, which left me limited to the amount of time I have been able to use a computer screen.

 
 10 things I have learnt since becoming chronically sick
 
1. If a person wasn’t a nice person before getting sick the chances of them suddenly becoming a nice person once struck down by illness is remote. Nice people and horrible people get sick, it’s the way of the world. Becoming ill doesn’t change someones basic personality.
 
2. Just because you go out of your way to help someone who is also chronically sick doesn’t mean your efforts will ever be acknowledged. Since getting ill I have helped many people with things like getting a diagnosis, employment law issues and disability discrimination cases. 99% of the time the people I help are extremely grateful for the help I give them. However when you help someone and you get no acknowledgement of the time and effort you have spent it is a real kick in the teeth. This is especially true if the person is also chronically sick and knows how physically / mentally demanding its been for you to help them. It is very hurtful but it will not stop me helping others.
 
3. Don’t expect people to understand your illness. Even if the person suffers with the same condition as you, their symptoms and physical / mental limitations will be different to yours. People within the chronically sick world seem to forget this and will happily sit in judgement of others. I never expect people to understand my illness. Over the years I have conceded defeat on trying to get others to understand my illness because my own understanding of my condition is limited. As soon as doctors start talking about genetics, parasympathetic and sympathetic nervous systems I am lost. It is as if my brain will not accept the information. If I don’t understand what is going on with my own body I shouldn’t expect others too.
 
4. Don’t expect others to actually believe you are sick. This is a hard one to accept. When I first became ill I felt like I had to prove how sick I was to others, despite having a diagnosis and medical reports that proved I was ill. People who you have known for a very long time will either believe you or not. All that is important is that the people who love and care about you support you and know that you are ill. I have had many people suggest that I make my condition up, that I love being at home all day and not having to work. Nothing could be further from the truth. People will believe what they want to believe and there is nothing I can do or say that will make them think differently.
 
5. Choose your battles wisely. Again this one was a hard one to learn. Initially I felt I had to fight every battle, getting a diagnosis, getting people to understand my condition, making people believe me. The only thing that matters is your health and not whether or not someone who hasn’t seen you in years accepts that you are sick. Getting a diagnosis and treatment is the only battle you should be fighting. All energy initially should be reserved for this, the rest will sort itself out as you go along and you will accept that some people aren’t worth fighting. I wasted a lot of energy I didn’t have to spare when I first got sick on battles that really weren’t worth fighting.
 
6. You will lose “friends” when you get sick. This is one of the hardest things I have had to accept since getting sick is that people walk away. I had many people I was friendly with at work only one person has stuck by me since getting sick. People get bored, don’t know how to deal with illness or on a basic level lack compassion. I have written on this subject extensively in the past, so I won’t bore you with my thoughts on it again.
 
7. Some people will assume if you use a wheelchair that you are mentally deficient. It never ceases to amaze me that people see my wheelchair and automatically assume they should direct their questions about me to the person pushing it. Before I needed my wheelchair I never made those kind of assumptions about people who used them. For me this is a very backward view of disability which really needs to be challenged.
 
8. It is possible to be happy, even though your health is crap! This was an important lesson for me to learn. After a manically busy  career in retail  the thought staring at 4 walls all day everyday for the rest of my life at times made me feel suicidal when I first became ill. I realised early on I could cry all day everyday and rant at the world or I could take charge of my life and find things to do that made me feel fulfilled. It would have been very easy to decide to give up and become a negative, angry person. I decided that if I wanted to keep people in my life I had to lose the negativity. No one wants to be around a negative ball of rage 24/7. I had to find the simple joys in life, reading a good book – my  free time had been severely limited before I became ill, becoming active in on-line communities, creative writing, blogging were all things I did to help me feel like I was contributing to the world and in turn gave me pleasure. Find things that you can do that give you back some control, a sense of accomplishment and pride. It can be anything you want it to be but don’t give in to negativity. I will be honest I don’t manage it 100% of the time but I never stop trying.
 
9. Some doctors are idiots. When I first became ill my attitude towards doctors was very positive, seven years down the line that is no longer the case. Some doctors like to pretend to their patients that they know everything, even though it’s not possible for one human being to know everything about medical science. What I really dislike about some doctors is their unwillingness to acknowledge that they don’t know the answer. Unfortunately I have met many doctors who believe that anything they can’t understand / diagnose means that the patient is suffering from a psychological issue rather than a physiological one. So many of us with Dysautonomia and Ehlers Danlos Syndrome have had a diagnosis of somatiform disorder rather than the correct diagnosis because a doctor was out of their depth and wouldn’t admit they lacked knowledge of these conditions. After all my own gp back in 2010 told me I couldn’t have EDS because it was too rare and Postural orthostatic tachycardia syndrome didn’t exist. Yet a year later I had a diagnosis of both, my gp was happy to label me with a mental health disorder rather than give me the tests I needed to prove what was wrong with me. Once you accept some doctors are idiots you are no longer disappointed or left disbelieving yourself.
 
10. Keep your sense of humour! I am extremely lucky that I grew up in a family that could find the humour in any situation, no matter how dark it was. Our gallows sense of humour isn’t always understood or appreciated. People don’t understand how my sister and I can be in absolute agony yet still be cracking jokes. It is our coping mechanism the people closest to us know that when we stop cracking jokes then that is the time to worry. Things can feel very dark when you first get sick by keeping your sense of humour and laughing in the face of adversity it can prevent you being absorbed by the horrible things that are happening to you. I have laughed / cracked jokes before intimate examinations – it’s always hilarious watching the medical staffs faces as they never know how to react! Our family also thrives on sarcasm and people often struggle to understand that we are being sarcastic not serious. 
I could probably add many more and make it 20 or 30 things I have learnt and I am sure you can add your own suggestions to these.
 
As always thank you for reading.