Now as you all know I’m trying to go down the positivity route, but after my experience yesterday it’s a struggle, however today is a brand new day, I have a wonderful family and friends who love and care for me, this is what keeps me going through this IIH shitty experience.
So yesterday I finally gave in to the fact that I needed yet another Lumbar Puncture, the house was clean and tidy, the girls were ready for school and I had mentally prepared them for what was going to happen, I had done this from Saturday, gently explaining that I was not feeling great, that the procedure would help alleviate my symptoms, and that we would all be better for it. My husband had even done the grocery shop in preparation (a) because I physically felt to ill to do so (b) because he wanted to head to screw-fix!! So for the first time in a long time he did the shopping, spending considerably less than I ever have!
So in my mind I could leave them all fed, watered and relatively happy, my parents picked me up at 7.30am, I said my goodbyes which is always so hard for the the three of them, my husband especially (he literally followed me round the house as I tried to get ready looking forlorn and helpess that he has to go to work)and for the girls however hard they try to I know they just don’t understand what is really happening with their Mummy.
I arrived at A and E looking and feeling like death, went through the usual pleasantries of triage then a bed. See below my lovely bed, there is actually bare sponge exposed there so god knows what I’m lying on! But at this point though my Mum is fuming I’m actually asleep!
I had a really lovely A and E Doctor, she was kind, considerate and caring, rubbing my hand each time, proudly had some codeine brought in for me, she said in her lovely accent (I wasn’t sure where she was from) “Darrrrrling have you had your pudding”,bearing in mind I’m half asleep, not quite with it, I looked totally vacant at her so she repeated it again rolling the r in Darling, no sorry, still a vacant look from me, and a mystified Mum in the background! “Darrrrrling have you had your tablets I am saying” she replies “ah yes I say yes thank you”she rubbed my hand and off she went, I never knew tablets were called pudding lol.
This article is from the Daily Mail:-
And Dr Taj Hassan, president of the Royal College of Emergency Medicine, warned: ‘Meltdown is an emotive term but what is undoubtedly true is that emergency departments and hospital staff are absolutely working at their very limit – and that’s not sustainable.
‘NHS staff are incredibly dedicated, but they are human beings and they can’t carry on working at 110 per cent with hospitals full, emergency departments overcrowded, and ambulances queuing up for prolonged periods
Yesterday you could tell that the above is true, apart from the the sweet A and E Doctor, there was literally no more kindness or compassion, now I know what you could be thinking, does this woman ever just not moan about her condition or her appointments, the truth is I promise you I try to go with open mind, positivity and most of all I try to be grateful, grateful that people are trying to help me, as I’m sure I could be portrayed as the woman who is always moaning or ungrateful, however I can assure you I am not.
Next I’m told by a male nurse I’m to have an ECG, again I was asleep so woke up to him pulling up my top and slapping the pads on, and me being thankful I had a decent bra on, not one of my white now dark grey holey ones. I was then told I would be moved to Ambulatory care unit where I would have my Lumbar Puncture, never in my various A and E visits had I been put here, so this was a new experience, plus I have never had a Lumbar Puncture within hours of arrival, so brilliant Mum and I thought..
Now I won’t lie I absolutely hate Lumbar Punctures, to be fair who would like them lol, but I know they reduce my symptoms greatly so know it’s what is needed.
Quick explanation on a LP, from the NHS website.
In most cases, you’ll be asked to lie on one side and to curl up, with your knees up and your chin in, so your spine is curved. This helps to separate the bones in your spine, allowing the needle to be inserted more easily.
Sitting while bending forwards is an alternative position, although it’s not always suitable.
An antiseptic solution will be applied to the skin at the base of the spine. A local anaesthetic is then used to numb the area of the lumbar puncture site. If a child needs to have a lumbar puncture, medication may be given beforehand to help them relax and keep calm.
The doctor (or sometimes a specially trained nurse) will insert a special spinal needle between the bones at the base of the spine and into the spinal canal, penetrating the membrane containing the cerebrospinal fluid (CSF).
Occasionally, you may feel a sudden, sharp sensation in one of your legs if the needle tip touches one of the nerves within the spinal canal. This is only a brief pain and it will indicate to the doctor a need to adjust the needle’s direction.
Once the needle is in the correct position, the CSF will begin to drip out. Usually, the CSF pressure is then measured by attaching a length of plastic piping to the needle to see how far up the tube the fluid rises. This is called manometry. You may be asked to cough or strain while this is being done and the doctor may press gently on one side of your neck, to check that the CSF can pass freely between your head and spinal canal.
Following manometry, samples are usually collected in sterile containers. Only a small amount is normally needed for testing, but more may be removed if the doctor needs to reduce the pressure within the head.
Once the procedure is complete, the needle will be removed and a small plaster is applied. The whole procedure usually takes about 30-45 minutes, in most cases.
I have had a few of these now, some amazing experiences where I am okish after and sadly two that left me so ill was bedridden for two weeks, literally only able to crawl to the toilet, this is because of something called a low pressure headache, now this in itself it often worse than the IIH, so my Neurologist kindly made a plan, that I should if possible lie flat for as long as I can after, I usually stay in overnight then home the next day or so.
This is what works for me and my body, we all learnt this is how I respond better to a Lumbar, I have always explained my fear of them, explained what happened to me after them and the procedure I’m meant to follow. I have always had a kind gentle person carrying out the procedure, never the same person, but nevertheless they have always listened, and been empathetic.
So I’m in the cubicle waiting for the Doctor, who is almost like a whirlwind, she comes in, neither of us catch her name she then does a physical examination checking my mental alertness and my coordination and balance, she checks for numbness or weakness in myface, arms, and legs; confusion; and trouble speaking and seeing clearly, she does it so fast I can barely think what she wants me to do next, it’s like I’m on fast forward doing dance moves.
The trolley comes in with the LP kit on, so I broach the fact I’m a bit nervous, and I get a short sharp, “well don’t,I do do this all the time you know, I am competent”
So I reply with “oh gosh I was not implying you weren’t sorry I just wanted you to know I’m a bit nervous”. Mum broaches the the aftercare bit we are both looking nervous, “is Kirsty able to lie flat for a few hours as per norm”and explains previous situations, and the fact that’s the protocol from the Neurologist. Well you would of thought we had asked her for her own blood, “uh no, that won’t be happening she will be fine to be up and about immediately after, you can wait in the waiting room in a chair but no there is no need for her to be led flat, go home and lie down, I do these all the time everyday and people do not need to lie flat”,almost rolling her eyes at me, so now I’m crying the wimp that I am, because I’m scared and now I know when its over I’m up and out the bed and in a few hours will be in excruciating pain, she hands me a tissue and says” let’s begin shall we”
The procedure begins, my knees are up to my chest, and I’m practically kissing my own boobs, trying to man up not cry, she only hits a nerve a few times which I am thankful for as it’s so painful, conversation starts about the condition between the Doctor and a student Doctor about the IIH, and how this LP will reduce CSF etc, then the corker hits mid LP, me being brave, head in bosom…
“So Kirsty are you going to try lose weight? What would work well for you do you think?”
Mum looks horrified, no reassuring words from the Dr, the usual are you ok, your doing well, not long now etc just – so fatty you need to shift a few pounds (my interpretation)
Well what works well for me well let me see – her buggering off and me never seeing her again would work quite well, instead I feel crimson with embarrassment, eyes stinging holding in the tears and ignore it. Cue – Mum, who gently explains before this illness I was a gym bunny, I had a personal trainer, I cycled miles for charities one being that b hospital, I was fit and healthy, and sadly at the moment excercise was not a choice, as it made me so ill… Silence from everyone.
Sadly though the LP was done, she couldn’t measure it properly, she told us that she didn’t know what she had taken off, and whether the reading was true because something had blocked it probably a bit of blood, so it was done but no idea of true readings -fanbloodytastic thanks love! And true to her word straight after, the bed head was up I was upright and she was gone, Mum and I sat there shell shocked, me scared of pain due to approach, back throbbing and Mum I think because yet again, she was disappointed in how we’d been treated.
And off we went, Dad collected us and I went to stay with my parents, obviously the children and my husband were overjoyed I was back there,it was lovely to see them so relieved that we hadn’t been parted for long, lots of lovely cuddles and kisses. Around 6pm the pain kicked in, and I’m managing it with pain killers and lots of fluids, I’m hoping it will subside soon, as I lay here the following day reflecting on it all, I feel sad I was not listened to, and that I know she may have been stressed, under pressure or being that much younger than me she hasn’t had as many life experiences, maybe she was having a bad day,who knows, but do you know what it makes me more determined to smile or show kindness to people who need it, no matter what age, race or gender, if they look sad, upset, worried – smile more, give a kind word, ask if they are ok.
It’s costs nothing to do so.
Loads of ❤ A smile is definitely bloody better than a frown xxxxx