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Talk about ‘Little Britain’ ‘Yeaaah I know’

Part 4 of 6

I’ve been a bit serious lately, but trying to fit 2 years of time into 6 parts to catch up with a blog makes you very factual. I’ll lighten up a bit now.

So I’ll pretend I’m still pregnant because this was a pretty good time for me.

We decided to do up the flat before baby pea arrived, thought if we changed it round we could live in it (ahah), but we did add some value to it. Mum helped us with a loan we could pay her back.

During pregnancy the weirdest thing happened - I gained more energy. Whilst most women are throwing their guts up, crying over a cottage pie and gaining 17 stone...I was project managing a basement conversion. Met some cowboys, one guy showed me how to tile the bathroom and because he was so slow I finished it, up to 36 weeks pregnant. I looked better and felt better even though my body was doing so much more, I was meant to be tired.

Started getting cramp in the later phase though and my heart rate was so fast when I was walking round I ended up in a wheelchair going round B&Q. I wasn’t gonna give up til I’d finished those bloody tiles.

Part 3 of 6 Big News

Whilst waiting for a referral and an appointment. I had a magnificent surprise, I was expecting. Was this the kick up the arse `I needed to get back in action in trying to find my diagnosis? Yes it was, now was different! Now I had to find out what was wrong. I had given up on myself but I was not prepared to let my illness affect my baby in anyway. I have never been so determined in my life, everything had to change.

So I rang the department and I told all my doctors the news and my appointments were moved forward. I was fast tracked to rheumatology.

I saw Dr Bruce, she was kind and listened to my back story, she took a look at my joints and scars from previous operations. She then diagnosed me with Ehlers Danlos Syndrome type 3.

My scars always stuck out and never faded very well. This means they were atrophic which is a symptom of EDS and I’ve always been super hypermobile and the physios had always told me my injuries were down to this. My bone spur on my elbow was formed by my 2 arm bones chipping away at each other when I served playing tennis. The elasticity in my joints meant that there was nothing to soften the blow of hitting a serve at 100mph and my elbows were swinging way further through the joint than they should. My shoulder blade was always winged and thats where I got my pain. Again weak connective tissue was not enough to keep my joints in place. My hamstrings were always tweaking when my knees were too extended. And the hernias were there because of a weak abdominal wall caused by a disorder in connective tissue - Ehlers Danlos Syndrone

SO hang on a minute! The whole time my injuries were caused by this disease, but what about my headaches? And shortness of breath?

Dr Bruce explained that patients with EDS can suffer with something called POTs (Postural Tachycardia Syndrome) - an abnormally fast heart rate when stood up. This can cause headaches and an inability to be on my feet for long periods of time. But I wasn’t allowed to take the test for this - A tilt table test, until I had given birth to my baby pea. Deep down though I knew I had this, I knew that my 72hour ECG had shown a fast heart rate and I felt calm knowing they were on the right track now. It was overwhelming knowing that everything I had been through linked to this.

So I cracked on, amazingly happy I had a diagnosis and looking forward to the arrival of my baby. I needed to take care of myself during pregnancy and the diagnosis meant that I was going to be looked after well. A huge weight was lifted knowing that I was under the correct care by my obstetrician

Part 2 of 6

In the midst of arguing and hating myself for not being able to get better and getting accustomed to my lack of energy. I began to get a swelling in my groin area every time I went to the toilet or was active in any way. This was on the right side now. It wasn’t right as I’ve done absolutely nothing in terms of exercise for over a year now. It reminded me that I still hadn’t heard from the hernia doctor about whether an operation was needed because I hadn’t been given the all clear from the cardiologist and I still didn’t have an appointment.

With a bit of rallying around I got in touch with the hernia specialist who agreed to see me again. She referred me for an ultrasound but also recommended I see a rheumatologist incase of it being linked to a connective tissue disorder.

Back to GP, back to discuss what next

2 years have passed Part 1 of 6

It’s been a long time since I’ve posted on here, I think down to being busy but also because not a lot was happening with getting any further to finding what was wrong with me.

As per usual a lot has happened. Me and my partner have started a record label. It was always his dream and I have helped push him to do it. It was also a new start for me. I have always been obsessed with music and for many hours at a time I have listened to music as a form of pain relief. The business means we DJ regularly and run events together. I pushed myself through these events and as usual I was always more tolerant to late night working so I didn’t notice my symptoms as much as I did when I was in the gym.

My health though was deteriorating, basically I was avoiding doing anything that exascubated my symptoms and I was lying down with my laptop most of the day. I was avoiding standing up at all costs and I was losing a lot of weight due to losing muscle. I didn’t want to go out and anything I did stood up wold give me a headache. This was causing tension between us because my pea (partner) wanted to go out and see our friends not be trapped in with me. Although he felt guilty leaving me in this state. I wasn’t very understanding because being this ill made me feel very insecure and anxious knowing that everyone was having a better time without me. I guess depression was involved now and low self esteem. I was sure that resting would cure me but instead I was getting worse and worse. I could barely do anything without getting a headache or feeling short of breath. It was hard to see a light

Cortisol

Christies were fast they got me in, did a dexamethasone suppression test to see if my cortisol would drop. Took 24 hour urinary cortisol levels and saliva levels (which I've just remembered haven't come back yet). My cortisol dropped to lower than 50 so this means that it is functioning correctly. Also my cortisol has come down from being very high to normal since stopping work. Which shows me I've been under huge amounts of stress for whichever reason. I was a bit upset about this but it does rule it out. In fact I burst into tears as I was hoping that it could mean i could be fixed. But at least I didn't have a tumour producing cortisol and another thing was ruled out

Christies

Because I had waited for so long to hear back from the MRI. I contacted an old Doctor who specialises in cortisol. I did a study with him on cortisol back in 2008 and I used to teach him tennis. He told me my level was too high and recommended I got back to the christies to see his team. He no longer works there but said he would be in touch.

I finally got a referral after 4 weeks of battling with the GP and have an appointment on the 18th April.

This is promising. I've been thinking a lot about the cortisol and asked the GP about it. He told me it can affect everything even circulation and the heart. I thoughy about how in the past having low levels and now high. It comes from the adrenal glands and they respond to stress. They also help regulate blood sugar. It's something they suspected could be wrong from the very beginning. But they hadn't found any abnormalities until now. I have been through a lot of stress in my adult life. And through lots of great things too. But if you think about it. I always end up ill after physical or emotional stress. I am secretly hoping that this could be the bottom of it all and I want them taken out. You can live without them. I've never had any scans on them so I hope that's the next step.

Pressure to get well..

Since I’ve been blue with low oxygen levels from whatever reason nobody knows as yet or takes seriously. I’ve stopped work. My partner (sounds more serious than boyfriend but also makes me sound like a lesbian) loves me more than peas and has said that I shouldn’t work to see if we can start a new career of djing. He wants me to start looking positive at other things in life apart from concentrating solely on getting better. Is a difficult one that when you are feeling that bad that you can’t get out of bed. But on the other hand it’s a great idea when I can string a few hours of feeling well together. It makes me feel a lot more human. So that’s what we have been doing and it’s getting great. I’ve done a few gigs with my dad’s LPS and been collecting my own records. We do a 60s 70s rock night and a Funk and Disco night together. We are 2 peas in a pod. We love the same music and wear outrageous 60s and 70s clothes to combine with each other (not completely match) as we are not hiking ramblers with mousy hair and bicycles in our kitchen. But we look ace. When we do the nights we have a few drinks. I often have more energy in the evening as long as I’ve spent most of the day in bed. So it’s a great release to get out and do something different with my life that isn’t too tiring. I really love it.

That’s all great but unfortunately I don’t have much money at the moment due to stopping work. The government have offered me 16 pounds a week sick pay. In perspective that would get me 2 meals for the week with no housing. I’m not sure I’d be very good at being homeless. It’s a bit cold for me. I wouldn’t last a night. So thanks government. So my pea (boyfriend) has been helping me which makes me feel guilty. My mum has given me a bit of money. But I’m under pressure now to get well. I’ve not got an appointment until April 14th with my metabolic Doctor who tested my cortisol levels that came back sky high but he hasn’t rushed me in. So I’m waiting to see what happens from this. I have no faith in any doctors from the MRI anymore. They are falling to bits. I’ve heard so many stories of tragedys and mistakes because it’s so over capacitated. It looks like the nhs is going to have to become private health care in the not so distant future. I need to get help quick now for everyone’s sake.

NHS in Dire Straits

Finally went for my appointment with Dr Hardy at the MRI. Hoping he would have received my fax from the doctors with the paramedic report showing low oxygen levels. He didn't have my notes and no one had told him about the fax. I had to explain the whole process again. He said he would speak to cardiology about what happened and informed me that my recent synachen cortisol test had been very high at over 900. He wasn't sure about why this is. But said he would ask Dr Soran the endocrinologist about this. Not heard for 1 month. Going to see Dr Soran on 14th April. No news to why they are high. No sign of cardiology being in touch.

Ambulance episode!!!

Funny but not funny. So the day after my 3k run I was feeling awful and slurring my words. And my oxygen level was 70%. My head was destroying me. Been suffering for weeks and weeks with this headache when I'm on my feet too long. It's debilitating. I spend half my life in bed trying to get rid of it.

So I decided to ring 111 to get some advice on whether to visit the doctor or not.

Naturally there was an ambulance arrived within 8 minutes. Excellent service. I didn't think they were from the NHS. I believed they were from another galaxy. Superman turned up and made me laugh. Took my blood pressure. Which is getting increasingly higher. Sneaking into the 150/90s these days when I'm cold and have headaches. But obviously never happened when I didn't the BP test in May for 24 hours. Either it's got worse or it went undetected in May. Anyway it was mildly raised. And my 02 was 83%. As I sat down it pulled back up to 99%.

He was the first point of call paramedic. He said he needed to send an ambulance because it would be dangerous to leave me just in case it dropped again.

So these 2 young men turned up. Didn't know where to look when they attached my ECG monitors to my chest. And naturally I tried to act fine but I stank pretty bad and when I talked I sounded pissed so I kept my head down and let them do their job.

They wheeled me across the 800m track in front of all the gym members. They did race me to the other side which was fun but in the grand scheme of things I looked like the shittest personal trainer ever. And I felt a little embarrassed.

Anyway once in the ambulance my stats returned to normal and my 02 was 100%. They said it was weird how my oxygen corrected itself and they said it looked like a cardiac shunt. I told them I had been tested for this but they said that the echocardiogram I needed was the stress test or a tilt test as it only happened on exertion not when just was lying down.

I explained the lack of interest from the doctors and the waiting times. And they recommended I go to a free cardiac assessment service called C.R.Y which is a private organisational charity for sudden death syndrome in young adults. I am booked in for this in Wednesday. Perhaps a second opinion will do me good.

They gave me the notes to give to my GP and let me go home.

Low 02 sats

Continued to monitor my 02 sats

I thought it might be a fluke or due to too much movement on the treadmill as to why the 02 was showing low on my finger. But I was proven wrong. After the run it was chronically low stood up for the next couple of sessions. I felt and looked like shit. Grey eyes and slurring my speech.

The run with 02 monitor

Cold cold cold again

So the weathers got really bad and it has had a massive effect on me. Chest pains have started again and my lips have been going more blue than ever. I am a smurf again. But I am wrapped up to hell with gloves on. The Gyms pretty cold but everyone else is in shorts still and I'm in Eskimo clothes.

The long shifts have been making me extremely breathless and tired and my boyfriends been really looking after me as I'm unable to do anything other than lie down when not working. He wants me to cut down or change jobs as he can see how ill it's making me.

This is really hard. I know I'm worse I know nothings changed and that what I'm doing is detrimental to my health.

I know cyanosis can be detected with a pulse oximeter so I bought one. I'm jot waiting around for doctors to determine whether I'm going to harm myself. I'm going to test it myself.

I have done and the results were astonishing. Sitting down my 02 sats were 99% excellent. On my feet when I start to feel bad they were dropping. It was all correlating to my symptoms.

I made a big mistake...

I decided to run on the treadmill with the monitor on. I was steady for 1km gradient 3 level 9 for 10 minutes

(02 99%). Then it dropped suddenly to 77%. I felt dizzy. I pushed through it picked up again and then dropped. I got off at 3km. Sugars were 3.8 after starting at 6.5 previous.

I recorded the results

Had a check for San Filippo type A because the MPS society called me up as I'd emailed them asking me if it could be causing my symptoms even as a carrier. They organised me to go back to Salford Royal. Hahaha who had already discharged me. So I was ready with guns blazing but the doctor who was previously there wasn't so I can only assume that someone had got there first and killed her....shame.

Had urine and blood test. Have yet to get the results back.

I've been to see a hernia specialist as when I am demonstrating lunges I am getting left groinel pain again where I had previously had an operation when I was 21 from tennis. This should have remained stronger than ever but the doctor told me I have a weak abdominal wall and this could potentially signify a connective tissue disorder. She said she will wait to decide on whether to operate based on the respiratory Doctor as she would like to see a diaphragmic ultrasound incase there are any tears in the chest causing the breathing problems.

In November I had some inhalation and exhalation pressure testing done. My inhalation was a lot weaker than my exhalation. I dont know what this means. Yet to be told.

My 02 saturation dropped to 88% during a shuttle walk test also. This is not normal. It also correlated with tachycardia (high heart rate) which means that my oxygen was low. Explains the high heart rate during the 72 hour ECG. Still had no correspondence to why this is happening.

Unfortunately when I went to see the respiratory consultant he was ill and it got pushed to January only by me pestering them. Otherwise end of Feb. The registrar was good, thorough and said he would do the scan of my diaphragm amongst other tests. He also took some blood tests for some muscle weakness wasting disorders. Thankfully these were normal.

I rang for the scan but the Secretary didn't know. So I rang and rang and finally went into the hospital to radiology to find out that it had been cancelled as there wasn't enough information sent to the department as to why the test needed doing. So they had cancelled it.

Still don't know when or if this will be happening.

See the hernia specialist next week she's not going to be pleased she has nothing to go off

Another large gap in time...

A lot has happened since September. Unfortunately not with the hospital but in my personal life.

The relationship I had with my new boy was great but the age gap turned out to be too much and i think I was a bit too much for him to deal with. He had some mental health problems of his own as he had lost his mother and I think because I was unwell he became quite dependant on me. This was difficult being unwell myself and I lost a lot of weight in October looking after him when he became in fear of losing me as the hospital was too much for him to cope with. I was getting sicker and so was he so we decided to break it off. He was a calm reserved sole. Every cloud though….as during this period of worry for him my favourite person in the whole wide world came along and helped us both. He’s a strong, happy and caring character reminding me a lot of myself. He’s a sensitive bugger and I love that about him. He has these beautiful green eyes….ahhhh I think I’m going to wear a pinafore and spin around in a daisy field looking at the sky and wrapping my arms around my arms because I’m so intensely happy…..‘I know…these people need to be shot’ Would I get an emergency banana in my pinafore just in case my sugars dropped or would it look like a erection and spoil the moment…? Not to any plan but I fell in love with him. Hard. We both felt the same and we went through a mad phase of drinking our sorrows away to try and take away the feelings for each other. We didn’t want to upset anyone but when we realised that it’s ourselves that we are upsetting and everyone else didn’t really give a crap we declared our love for one another. As expected it wasn’t plastered all over the front of hello magazine and we really got stressed over nothing. We are now happily living together, laughing every day and planning our lives with each other. I always thought it was bollucks when ppl say ‘you know he’s the one when you know’. I would of previously said “piss off Loraine your husbands been seen in the work staff room with the new girl” Loraine being the appropriate name of course, perhaps because the name signifies a quiche and not everybody likes a quiche…

Anyway….Yeah I’m gonna marry this one. I love him too much. :)

Back to my health in the next post

No Cardiac Left to Right Shunt

I have done the bubble echo test. I saw the bubbles stay on the right side of my heart. Incredible to see. I was pissed off that there wouldn’t be a quick fix for my health by having an operation for this but also it was reassuring, it looked so strong and I sort of knew that it wouldn't be solely this because there's no way this could have cause hypoglycemia. I’m just glad its not a complication of my metabolic condition.

I had a lot riding on this test but for the first time ever I didn’t act out. This is due to (I hate to say it as I don’t trust anyone after the last few years) my new boy who ceases to amaze me everyday in how kind a person can be. He’s very different from anyone I’ve ever been with before. For one he has a brain. But he’s also been through a lot more than I can imagine and this makes him really strong and comfortable in these situations. He’s good with me when I’m not well and cares. My heads just adjusting to this as it’s quite easy to become so spectacle of people when you have surrounded yourself with the wrong ones for so long. So yeah he calmed me down and I care about him a lot so I won’t be acting out as it could upset him and I don’t want to do that. He’s ace.

Anyway now it’s back to square one really, back to respiratory if it’s not cardiac. Saying that I’ve not seen the consultant yet as he’s apparently on the moon every other week. The cyanosis could be due to not breathing right during my sleep. Clutching at straws again though. There could be things missed, no ones telling me anything. Me and my mum are going insane looking for answers. We need people who care on our sides, not generic doctors who tick you off as not important. I don’t want to waste any more years feeling like this. I’ve asked for all my results from 2009 at Salford Metabolic Hospital to send for a second opinion. I think over the years I’ve developed enough knowledge to send my information to the right departments.

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The outside....a reflection of the inside?