Brave

I don’t class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don’t have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn’t travel the hours journey to the hospital by myself. Having pointed out the fact I don’t do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn’t have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don’t know. I’d have had a fucking heart attack, there isn’t enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don’t run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn’t travel alone? It was still fucking huge for me to navigate the hospital alone – one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor’s appointments at the gp surgery by myself and the same for dental appointments but it doesn’t mean I am happy or confident doing it. I hate it. It has got to the point where I just don’t like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before – someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who’s walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality…..once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can’t blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn’t have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn’t be in anyone’s way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it’s a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn’t doing its job, I have had two migraines in the last two weeks. Plus I really shouldn’t be on amitriptyline with PoTs

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe “There’s mummy look”. Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can’t tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today’s travel and navigating the hospital corridors have left me exhausted. I don’t feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.

What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

Insomnia

I have written about my struggles with insomnia previously, thankfully though its not been something I have struggled with since around 2016 when I was prescribed melatonin and the antidepressant Mirtazapine . Both have improved my sleeping habits immensely. I also take a low dose of amiltriptyline to prevent migraines and again this helps me sleep….until last Sunday night (18th November).

Sunday nights have been a sleeping issue for me as long as I can remember. I think the sleeping problems started over the anxiety of going back to school on the Monday. Throughout my school years I was bullied, so going to school was a cause of anxiety. If ever anyone says to me their school days were the best of their lives I want to punch them in the face. For me they were a source of misery and I never knew who would be gunning for me next. Primary school was particularly awful, comprehensive school was slightly better but I just felt so out of place there having come from a tiny school of less than 400 pupils to then be amongst over 800.

After school I then had the Monday morning work anxiety. I would be ok on Sunday until about 5pm and then I would begin to worry about events that would take place at work during the week. Again I was the target of two bullies unfortunately both were my boss and when one left the business the other one jumped right in and took their place. I loved my job and was good at it but it did absolutely nothing for my mental health.

So now after years of Sunday night anxiety its ingrained in me and I can never sleep or settle down for sleep very easily on a Sunday evening. So when it happened this Sunday I just shrugged my shoulder and thought oh well I’ll sleep Monday. Yet when Monday came around the same thing happened no sleep. I put Mondays lack of sleep down to having bloods being done on Tuesday morning. Its always a drama getting blood out of me. It was it took 2 people three attempts. I’ve got a lovely blown vein on the back of my hand. 

Tuesday was also dramatic as our washing machine broke down, well died to be more accurate. It was about 5 years old and had been a really good machine – washing machines don’t seem to last very long in this house. Probably due to the dogs stuff that fills the waste pipe with sand. I have a Rug bag  which is what horse owners put their horses rugs in to stop all the dirt etc going into the machine – its a bit like a lingerie bag for horses lol! A new machine was ordered and set up for delivery the following day. We can’t be without a machine when we have two elderly dogs who have accidents.

So when I lay tossing and turning last night I presumed I was anxious about the new machine being delivered. I wasn’t remotely anxious I just couldn’t drop off to sleep and if I did drop off I was only staying asleep for ten minutes or so. Today I am exhausted three nights of very little sleep has destroyed me after being used to sleeping again. On all three nights out of desperation I have increased my melatonin, added in an extra amiltriptyline and then last night I toyed with taking my last diazepam which is my emergency pill for either the dentist or when my neck pain is off the charts. I don’t have the doctors until next week  and I will ask about an additional prescription of diazepam as when the neck pain is bad its the only thing that relives it.

Last night well technically this morning I didnt drop off until gone 02.30am , at 7am I received a text message to tell me that our new washing machine would be with us in 20 minutes. So bang went any chance of managing to sleep for a bit longer. Jay has gone back to bed. He can fall asleep pretty much whenever and wherever he wants. I am unable to do that and I am always terrified if I sleep during the day I wont sleep at night. So today I will push through until I can’t go on any longer. My plans of using my embroidery machine have gone out of the window. I am so out of it I’d be a danger to myself holding a pencil let alone using machinery. If I didn’t have a load of things being delivered today I would have crawled back into bed right now, regardless of not being able to sleep tonight.

Insomnia causes my pain levels to increase, my mood to plummet and makes me thoroughly miserable. I hate not sleeping because the knock on effects can last weeks. Its been so long since I have had a run of three nights that I had forgotten how bloody awful insomnia makes me feel. 

Fingers crossed that at some point this week I fall asleep before 2.30am!

Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain go through where they wonder if they have turned into a bit of a moaner. Obviously a lot of us have pretty reasonable things to moan about but I am started to get paranoid that maybe I have crossed an invisible line from previously what was an acceptable level of moaning to an unacceptable level of moaning, for those whose lives aren’t blighted by chronic illness.

 

I usually say very little about my health on social media, its like my own dirty little secret that most days I am wracked with pain or have ptosis or feeling anxious or whatever the hell is going on that day. When I do post it’s usually because things are much worse than normal. I have posted a lot this summer about my health because things have been the worst they have been for a long time. The heat wave although helping my joint pain no end made my PoTs symptoms absolutely horrific. Every movement kicked off palpitations, my blood pressure was horrendously low in the 80/70 range most days. Leaving me feeling faint and exhausted. I could barely manage to walk some days. Many, many days were spent in bed feeling very sorry for myself. And do you know what? I get very angry  when I feel sorry for myself because I feel weak and vulnerable.

 

Regular readers will also know that my CSF Leak has come back, although it’s not at the level it was in 2016 I have had several days over the last few weeks where I have been unable to leave my bed because the pain is so intense. It makes me want to vomit. I described the pain to someone as feeling like both my eyeballs had been removed and dipped in acid then rammed back in the sockets. Whilst the back of my head feels like I am being beaten to death with a shovel. Now if you were experiencing those levels of pain do you not think, honestly that you may mention it once or twice? Or however many times that you want to. Because believe me when you are dealing with that kind of pain you just don’t care what people think.

 

Along with the pain the CSF leak brings I have also had some additional symptoms like vertigo that only goes away with lying flat. Losing my balance very easily and being unable to bend down / lean forward repeatedly as this is triggering the leak headache. As I say I am lucky it’s not as bad as it was in 2016 but it’s bad enough.

 

In the last few months I have also had my migraines return, I have ended up having to take amitriptyline every night as a migraine preventer. It’s kind of working since taking them at the start of July I have had one migraine. However my migraines have come back as if they are amped up on steroids, I have to lie in a darkened room, vomiting into my bedroom bin because I can’t get up.

 

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had an intense amount of pain in my toe. It actually hurt to touch the nail. I lifted up the side of the nail ( I had both sides removed over ten years ago due to repeated ingrowing toenails) and the nail came off in my hand. It hurt but it didn’t hurt anywhere near as badly as it had done just before the nail came off.

 

Have I bored you yet? Because believe me I am bored with it. I feel like I am in a never-ending soap opera where shit keeps happening and I have no control over it. So yes I may have mentioned on social media a few times over the summer how fucking awful I am feeling and to be fair I haven’t even touched on about 50% of the health stuff that’s been going on of late. This is just the stuff I can think of off the top of my head.

 

Admitting you are sick on social media is a dangerous game, post happy cheerful stuff and you are judged to be not as sick as you make out. Post stuff about how fucking awful you feel and you’re moaning. You can’t win. I don’t want my life to revolve around my health conditions but there will be periods of time when it does because all I can do is just keep my head above water.  To feel that I can’t express what is going on in my life, when I can go weeks where the only person I see or talk to in the flesh is my husband, just seems cruel. It’s not that I want someone to talk to – and thank you to all those who have offered me a safe place to vent. It’s just sometimes even I don’t believe what is going on health wise. I don’t think I have ever been completely honest with anyone because there is always more than one thing going on with me. I always just give those closest to me the headline news not the full story.

 

Any way that’s me, I am bored with this subject already and if I am bored with it I have probably sent the rest of you to sleep also. Mr Myasthenia Kid has been on holiday the last two weeks ( well just over ). It’s the longest holiday he has taken in years. We’ve really enjoyed the time we have spent together. We’ve managed to work on a few projects together, which I first touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  taking it from this – those dots on it are from dog drool

To this

 

Jay did the lions share of work because I am just not physically able to. I did a small amount of painting, basically just catching the bits that he missed. We have painted the stripped pine with hard wax oil which means the wood is now water-resistant and has a lovely finish. It took several days to dry and for a while we were concerned that the top of the table felt very rough. However as the hard wax oil has dried its left a silky smooth surface.

 

Jamie’s work also got the thumbs up from John Scott and Jo Carter on the Sewing Quarter. I don’t think I have ever seen Jay so proud as when they both said how lovely the table looked. I am very proud of him as it was no mean feat sanding the table top down.

 

 

 

Not happy with doing  just the bedside cabinets, the lounge coffee table on bank holiday Monday 27th August 2018 he also painted our kitchen chairs. They look fabulous and make such a difference. And we still have paint left from the 750ml of Scotch Mist Frenchic Furniture paint.

 

I also got a shout out on the Sewing Quarter Saturday 25th August – cheers John xx

 

 

My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

My Week….

I feel quite naughty as I haven’t posted as much as I normally do during this last week. By now on average I’m up to three posts. With all my new followers and roughly 20-30 page views per day I feel a bit guilty for not updating you on my week.

Well this last week has been a bit of a blur, mainly due to taking Amitriptyline 10mg during the day. Boy does that stuff really knock me out. Today is the first day that I haven’t felt like I have consumed 3 or 4 pints of strong lager. The Amitriptyline has been prescribed for my nerve pain and it works quite well. Its not gone completely but its the only thing that’s ever taken the edge off.

 On Monday my GP was so pleased with the results I am getting with using this medication he suggested adding in 10mg in the morning. Ive been in a warm fuzzy / sleepy state all week and totally out of it. To be honest I have barely been able to function. I am a member of quite a few forums and I have stupidly posted on a few of these boards. I was barely coherent talking so goodness knows what my typing has been like!

I have deliberately not done anything official or that needed high levels of concentration this week due to not being entirely on the same planet as everyone else. Thankfully the dopey/ dazed effect seems to be working its way out of my system. I have now been taking it for five days and my GP did warn me I could be completely floored by taking it during the day. I have spent most of the week in bed listening to Radio 4 Extra or the BBC World Service.

The results at night have been very good. I take 20mg of Amitriptyline about an hour before I want to settle down. Since taking it I have been sleeping a lot better and the quality of my sleep has also improved. I am still waking up during the night due to being thirsty or needing the loo, due to my excessive fluid intake but I am dropping off to sleep much more quickly when I get back into bed.

I didn’t think the amitriptyline would work but I gave it a go anyway just so that I could say that I had tried it. I am really glad that I have. I think the dose may need to be gradually increased to get the full benefit. However for the first time in over ten years I have no burning sensation in my left calf which always seemed to start at night as soon as I got into bed. My left thigh also no longer continually aches. I still have a numb spot on my hip just where your knickers sit, but hey you can’t have everything sorted straight away. Its going to be trial and error until we find the right pain medication to get everything under control and more manageable.

Due to my two falls on Monday I have had quite a bit of pain this week. The Amitriptyline is great for the neuropathic pain but it doesn’t stop the joint and muscle pain. Presently I feel like I have been trampled on by a horse. I am keeping on top of my pain medication and on the whole its dropping it down to a more tolerable level. Some days its worse than others but at present I am coping.

Mood wise I have been a bit up and down. Its been a much better week than last week and the support I have been shown has truly touched me. On occasions its hard to concentrate on the good things in life and you find yourself focusing on the bad. I am trying to stop myself when I notice that happening. I distract myself with music, TV programmes or ringing / text messaging friends.

I don’t have anymore to share with you in this post having been barely conscious this week! Hopefully I will be back on planet earth properly soon! Until then take care everyone.