Sepsis

It’s been a strange and eventful few weeks. 

It started with a new niggle that was annoying more than anything, but turned out to be extremely serious.

It started as a slight pain in my left rib, under it and I thought ok, I must’ve pulled it or hurt my side without realising so I put deep heat on it and took paracetomal more often. 

It niggled for about four days, and then suddenly it became worse, and had started spasming. I had never had a spasm pain there before but, when you become chronically ill you tend to get used to spasms or aches and pains and don’t take much notice of them. So I continued to put deep heat on it and also a hot water bottle to try to ease it. 

For three days it became progressively worse, and had spread under my left breast, rib and back. Again I was more annoyed than anything, I silently started to curse my ‘stupid body’ and continue to rest, use deep heat, water bottle and re position my electric blanket so it was against my back in bed. 

It was making me totally bedbound, walking was near impossible and the pain was running through body bed limbs like lava. 

Two days later I could’ve move the top half of my body due to the severe cramps and the pain had spread into my chest. So, I decided to call the doctor for diazepam which I use when I seize and cramp badly. This was on the Wednesday, the locum was great and prescribed them but told me to call again if it didn’t ease. 

I was sure it would, and I’d actually sleep for more than the two hours a night I had been getting due to the pain and unable to move without cramping. 

But Friday, I was awake all night and the pain was horrendous. I waited until the surgery opened at 8.30 and called to talk to a dr about advice. What happened next was so unbelievleble and unexpected if I had been in front of said dr, I would’ve waged war in the room and there and then phoned the manager of the surgery. 

Her response to my explanation of widespread crippling pain, cramping, chest pain was that I need to learn to manage my health more.. Without relying on drugs. That it was probably the meds making me iller and there wasn’t much she could do and wouldn’t prescribe me anything because I’m on too much. 

At this point, I tried calmly to explain this is not normal for me, I have never had this before and I was worried, which rarely happens. That I wasn’t calling for drugs but any kind of advice and the previous dr had told me to do so if I got worse. 

She again spoke about drugs, and getting a tens machine and there wasn’t anything she could do. 

I put the phone down. 

One because I was disgusted with her ‘professional’ advice and two because at that point I was in too much pain to talk or function properly. 

I held on for two hours, crippled and in pure agony before phoning my parents to say briefly what was wrong and they called ambulance. 

My father rushed to my place and my son was home. The ambulance crew were lovely, they checked me gave me gas and air then asked if it was ok to take me to my Drs as the queue in a&e was four hours and I needed to be seen now. 

So I said yes of course, and I ended up being taken their in the ambulance. With my father and son.. 

Straight into see the dr I had spoken to that morning. 

To say she wasn’t impressed was an understatement, until she examined me and diagnosed pluersy. 

Now I had noticed purple mottling up my leg and she brushed it off and said it was temperature. Later that mottling would be important. 

But for then, I told her about it wasn’t drug related, I hadn’t wanted more pain meds and that I had cut my meds down if she actually checked my records and how was I meant to control my own health with the conditions I had? Or should I have treated my own pleurisy too? 

She was partly annoyed and partly embarrassed about it and my obvious illnesses and pleurisy. She ordered bloods to be taken and my father would take them to the hospital that night to get them checked urgently. Then prescribed my antibiotics and said she’d phone the bath pain clinic to speed up the re arrangement of my appointment as I was very in need of it.. 

I left relieved I now had a diagnosis and it would ease up in a few days and annoyed that I had to have an ambulance and taken to her when if she’d just listened that morning it could’ve all been avoided. 

I later found out when talking to the paramedic who was telling her I needed to be seen now, she asked if I had a tens machine and the paramedic who was already outraged with my story of that morning, had a go at her ridiculousness. 

So I went home, my father taking me in a taxi in my chair and got to bed hopeful to start feeling better soon. 

Saturday I felt really rough, but knew it would take a few days for the antibiotics to kick in. 

The pain and cramping in my side got worse and worse, I was up all night with it and after researching the symptoms of pleurisy,  wasn’t sure that was what I actually had because I didn’t have many of the symptoms and other symptoms I had that didn’t match. 

Through the night my chest started paining, a dull ache that spread until I was finding it hard to breathe. By the afternoon I became doubled up again in agony, pain I had never ever had that was so bad I couldn’t move, breathe, without tearing through my body and going dizzy. I couldn’t stop sweating , my temperature was burning through me. 

I’ve always said, I can handle pain I’ve been through non drug birth of my son and never thought any pain could or would be that bad again. 

I was very wrong. 

I got to the point I was just a ball of massive agonising pain, dizziness, barely breathing fetal position. 

I had to try 3 times to call my parents as by this point I kept falling in and out of reality. 

All I could get out to my father was, I’m really bad can you call the dr and put the phone down. 

Care direct called me back and I could hardly answer their questions. Within two minutes he said an ambulance is being dispatched and I just put the phone down and drifted off again. 

Within ten mins my room was full of 3 paramedics, my partner and my father. 

To me it seemed impossible for the symptoms to get worse but by the time they came, all I could feel was massive body shaking pain barely breathing and trying my to move because the moment I did, I knew the pain would tear through my side and have me pass out again. 

The paramedics thought I was having a heart attack, and put a valve straight into my arm and  injected morphine and something else into it. I’m not sure what. 

I vaguely remember my father saying ‘she doesn’t like taking strong  meds’ and I replied, “anything anything I don’t care”

The paramedics gave me three doses of morphine before the pain started to ease, I was hooked up to a heart monitor, asked how long is been like this, and asking about the dark red mottled skin all over my legs and arms. 

I was ‘stabilised’ and taken into the ambulance, oxygen up my nose, morphine still being put into me, and me saying “I’ll be ok now, it’s calmed down I can go back home and rest” 

That was not going to happen though and I was put into a&e where there were no beds so I was on the ambulance trolley in the corridor. 

The paramedics were brilliant, they really looked after me, kept apologising about the corridor and one female paramedic stroked  my hair saying “I was still pretty despite how ill I was”

I replied I think she needed to be on this trolley not me if she thought that.. 

I was in and out of awareness, the pain had eased but every so often swept through me and I was doubled up again. 

I was trying to ease my father and partners worries by trying to act ok and making a joke or two but I couldn’t keep it up so just tried to keep awake and control the symptoms as best I could. 

I was in the corridor for hours, I was 5pm ish when I went in and gone 2am when I left. 

The Drs and staff kept apologising As they had to examine me in the corridor just pulling this make shift screen around me. 

But I truly didn’t care, they were all brilliant and took care of me so well that I am so grateful and appreciate of the staff of the BRI hospital that I am mentioning the actual hospital for the first time ever in my blog. 

My father was a porter in a&e there for ten years so we both know a lot of the staff and this did make it a lot easier. I hate going in to hospital, and have avoided it at all costs of the last three years. 

But the care that was shown to me and the other patients in the corridor was so superb they deserve the recognition. In these days of our NHS upheavals and striking of Doctors, I fully support them and hope the conditions they work under are massively changed for the good. They deserve it. 

After an hour I was diagnosed with an infection in my lower left lung/pluersy and Sepsis. 

Sepsis? I had no idea what it was, let alone how I had it! 

Basically Sepsis is caused by your body’s response to an infection. The bodies immune system goes into overdrive, setting off a series of reactions including widespread inflammation, swelling and blood clotting. This can lead to a big decrease in blood pressure, which can mean the blood supply to vital organs like the brain, heart and kidneys is reduced. 

The infection in my lung was what triggered Sepsis. 

If it’s not treated quickly it can eventually lead to multiple organ failure and death. 

So it’s very serious and the symptoms can mimic a virus at first and go undetected until it develops, which happens very quickly and needs to be diagnosed and treated very quickly. 

Which is why my breathing dropped, I was so sick so quickly and the mottling of my skin I had noticed and the Doctor at the surgery had dismissed was extremely important. 

She should have, if not recognised the mottling at least of examined it and checked for causes instead of dismissing it so causaully. 

The doctor at the hospital said I was extremely lucky, another few hours and it could’ve  be been touch and go and me in icu. 

I am never ever dealing with that particular doctor at my surgery again, and I am yet to decide if I should put in a complaint to the manager at the surgery as suggested by hospital staff. 

And that’s the thing with having chronic conditions, we can often not get the medical treatment we need due to 1, us thinking it’s just our conditions playing up and 2, having ‘professionals’dismiss it as  such and putting every or any new symptom onto being chronically sick. 

I was so very lucky to have been diagnosed in hospital so quickly treated so well and given a massive dose of antibiotics and penicillin into my arm valve. 

I’m very lucky that I am still here to be telling you about this experience. 

It’s been three weeks since that hospital dash and I am still pretty sick. My other conditions decided to join in the party and on top of the sepsis and lung infection, have absolutely floored me. 

I can’t get up and go to the bathroom without it causing total exhaustion, pain, dizziness and muscle spasms. 

My body is in constant crashing mode and it could take me many many weeks to get to my usual level of wellness. Which isn’t particularly well anyway, but boy do I wish I was even that well again at the moment. Any improvement at the moment would be gratefully accepted and clung to. 
The first weeks antibiotics and penicillin didn’t clear the infections nor the second weeks I had from my doctor as it hasn’t cleared in that week. 

I had a dr visit me this week as I am still unwell and having symptoms. She thought I might have a clot on my lug so took bloods and had them sent to the hospital straight away. 

The dr called me in the evening to check on me and hand me over at 7pm to the on call dr who would phone me as soon as my results came through. It was an anxious waiting time for myself family and partner as I would’ve been taken straight to hospital. 

At 8pm the results came through and I didn’t have a clot, thank goodness! 

I had to wait until the next afternoon for the rest of the results, they showed I still had slight infections but the dr has suggested that we see if it will clear up itself before given more penicillin and antibiotics as they could actually block the infections if I’m on them for too long. 

It will take me weeks or months to get over this fully, due to my other conditions, and I need to take extra care, be cared for, do nothing that will put extra strain on my body total rest and if I feel worse or the symptoms escalate call 111 straight away. 

I will eventually be clear of the infections but I urge you to please check for Sepsis if you are showing any symptoms of it. 

Not just us with chronic illnesses but anyone who is showing symptoms of 

High temperature 

Chills and sweating 

Fast heartbeat 

Fast breathing

Feeling dizzy or faint 

Confusion or disorientation

Nausea and/or vomiting 

Diarriah 

Cold, clammy and pale or mottled skin. 

I had all of these symptoms, yet it was still missed at first. 

And I think without the massive pain that my lung infection/pluerisy was giving me, brought on more so by the sepsis, I could’ve continued to blame it on a virus or my conditions. 

So please keep in mind the Sepsis symptoms if you’re feeling unwell and anything unusual is happening aside from any other ailments you may have. Please get yourself checked out and mention Sepsis to a health professional. 

You’re not wasting their time, your time or risking waiting to see how you feel the next day incase it’s nothing. 

It’s better to be safe than sorry and be here to tell the tale of your experience, than to be unable to tell anything ever again. 

I am extremely lucky and grateful for my family and partners support and care, and friends, who though few in number, have been here for me every step of this experience. 

I am truly blessed to have such love and support in my life. 

As bad as it was and is for me right now, I am and will also be forever grateful that I am here to be able to tell you guys my story, in the hope it could help save some one else from the same experience and what warning signs to look out for. 

Take care of yourself and others

🙂 

To see or not to see

So.. I am having a pretty bad flare at the moment.  

Bad chronic all over pain, heightened symptoms, pretty much bedbound and my neurological problems are at an all time high. 

I bought an eye patch last week as advised by the eye hospital to give my worsening of vision in my left eye a rest. I found it quite amusing when I first put it on, being from the town of the infamous Blackbeard! 

Ten minutes later my amusement had quickly evaporated and for the first time, I felt fear. An emotion I very rarely experience. 

Putting the patch on my left eye I quickly realised I couldn’t see properly out of my right eye.. Much like when you have a gunk film over your eye that blurs your vision, my right eye around the edge was blurry and I couldn’t focus at all. 

I tried for ten minutes, closing my eye, checking I had nothing in it to cause the blurriness, taking the patch off covering my left eye with my hand and finally putting the patch on my right eye. Which was a huge mistake as I’m 50/75% blind most days in my left eye and I snapped the patch off my face and chucked it on the floor, as if in some way to get it away from me. 

Now, unbeknown to me for I don’t know how long my right eye is now losing vision. Around 25%. 

I wil admit I felt fear rush in as I laid back down and tried to make sense of it while my eyes throbbed from testing them. And questions, lots of questions. 

How long had my right eye been like it? How could I have not known? What does it mean? Is it the huge neurological problems I’m experiencing at the moment, or something else. And finally, am I slowly but surely going totally blind? 

I’m guessing the vision in my right eye has been balancing the vision in my left eye to such an extent I never noticed the sight deteriorating in it. 

Luckily most of my fear was replaced by questions and what I should now do to address the matter. 

I decided to not mention it until I could moniter it over the course of the next week. So that’s what I did, I wore my glasses more, I did make shift eye letter reading tests by placing my a book, my laptop, hairspray/deoderant bottles at a certain distance and slowly bringing the items forward to see how close they had to be for me to see writing or the object.

I suffered terrible eye pain doing it, and realise my pain is now in both eyes if I look at something for long periods of time and I develop a severe headache. 

I now have a headache 24/7 along with total confusion at times to where I am, who I’m talking to, what I’m doing or what to say or write as it becomes a gibberish mess in my head. 

I am starting to realise that there is something serious going on in my brain, whether it’s the pressure of my swollen brain and spinal cord or something else I do not know. 

I spoke to my mum about it last week and said I was going to wait and see (no pun included) how the week went before I phoned my dr. 

As a chronic illness sufferer I like so many tend to treat serious symptoms as a tiny problem when most ‘well’ people would be taking themselves to hospital and not waking to see how or if it developed. 

I’m so used to having weird new symptoms come and sometimes go, or come and stay that it’s become the norm for me. 

Well, my father dropped my meds off on Wednesday and was concerned as I’m in a flare. Now I, in stupidity remarked that at least my right eye sight hasn’t  gone.. With which he answered, “what do you mean your right? Is it both now??!” 

I could’ve kicked myself, I didn’t want to worry or stress him out but it was out there now so I explained what was going on and he made me promise I would call the doctor the next day and tell her. That I shouldn’t of waited and this was serious, what if I woke up blind? 

I hate worrying him but I could understand what he meant so I did phone the doctors the next day. I don’t think I would o if I hadn’t of promised, I can’t break a promise to my daddy though! 🙂 

My doctor got back to me and is furious I’ve still heard nothing from neurology, and said shed phone them as soon as we had finished our call. She wants me to go to the a&e eye hospital for immediate eye tests as she said, it could be something else seriously causing this and she’s really concerned I could have something else going on which might make me lose my sight completely. 

She also highered some of my meds to help with the pain I’m having. 

The only problem is, because I’m in a pretty bad flare at the moment I’m unable to get to the hospital for the tests and she advised me to wait a few days before I attempted it or it could trigger another massive crash. 

So I’ll wait til after the bank holiday Monday and have my eye tests then. 

There’s a bit of me that is concerned I may wake up blind one morning, or with 75% loss in both making me practically blind. 

But the bigger part of me is trying to stay positive, take care of myself as well as I can and try not to allow the issue to take over my everyday life. Ok so my right eye is now partially blind but I can still balance my sight out enough to be able to see. I wear my glasses as much as I can and try not to strain my eyes. 

As always, there’s going to be no quick solution or remedy. It’s one of the thousand waiting games I’ve had to patiently wait and work through since becoming unwell. As all people with chronic or bad health conditions do. 

As my mother says, it’ll all come out in the wash eventually.. Which is a motto I will keep in mind as I go through awhile new area of symptoms and tests. 

Dr on the warpath

I love my Doctor! 

I spoke to her on Tuesday and she got very annoyed and angry that I’ve still not seen the neurologist again as I was supposed to this month. That his letter to her dismissing my diagnosis’s and health and the meds and care I’ve been given was as dismissive as when he spoke to me. 

That my tests proved I’m half blind in my left eye yet he’s not seen me again as he should’ve done this month. 

She’s writing to the hosp asking for the next available appointment for me and tests and not specifically with him. 

The sad news that’s she’s leaving was a shock to me, as she’s been so good to me and brilliant at sorting appointments meds care for me. We chatted a bit about why she’s leaving and she’s not happy about it but has to due to personal reasons. I’m really going to miss her, not just as my dr but the friendship we’ve built up and nattering about non health problems . 

She’s promised to hand me over to another dr in the surgery who has some experience with chronic illness and also to talk to her about my history, current issues and that I need special care and home visits. Also that they will need to chase up ignorant ‘specialists!’ :,) 

I’m feeling happier that something is going to be done about my ongoing neuro and eye problems. My dr is asking for an MRI, CAT scan, brain probes and spinal scan. Hopefully this will give me some much needed answers! 

Plus, once these tests and results are done I can be seen at Bath hospital for pain and rheumatic diseases as an out patient not an in patient as was first arranged. She’s arranged it for me and I am incredibly greatful for this. 

So fingers crossed the next couple of months will be full of answers and the right care! 🙂 

Puppy magic

So, my sons pup is now part of our family! 

My son had to pick him up earlier than expected as the trainer got very nervous that he would let him down as another customer had done. 

As you can imagine, picking him up a week early meant the home hadn’t been puppy proofed and we still had items to buy. 

But, after much rushing, tidying, sorting it was done and the amount I love the lil guy already is ridiculous! 

He is the most beautiful thing I’ve ever seen in my life, he looks like a stuffed toy lol even my a father said, he looks too perfect to be real! 

He has been named Diago and the names suits him perfectly. 

He is beautifully behaved, apart from nipping a lil too much. But that will easily be sorted through giving him a toy to chew instead of you, and as soon as he’s old enough be taken to puppy training classes. 

He also hardly slept for the first four days, missing his mother and siblings, plus in a new place. He doesn’t bark, he howls! Just like a wolf :,) 

I’ve heard many people over the years say how therapeutic having a pet can be, and now I understand exactly what they mean. His lil face makes me smile, his running around being daft makes me laugh and cuddling/smoothing him makes me happy. 

It’s a great distraction from pain and symptoms, his antics put them to the back of my mind. 

Even yesterday when I had my eye hospital appointment and I was left with a blinding headache and almost total loss of my left eye vision, coming home and having him run up to me made me stupidly happy 🙂 

I had the exact same eye test as I had at the hospital in January, flashlights at you and you press a button on a switch when you see a light. My left eye went almost straight away, and the nurse couldnt focus the eye glass properly because of it. The headache was horrendous, and I’m pleased I was wearing my sunglasses that day because I really needed them after! 

They’re sending the results to whomever requested the test and I’ll hear back in a few weeks if I need to be seen again. I have a doctors appointment next week though so I’ll try to get any results back then. 

Generally I am still feeling much better. I am spending more time downstairs on the sofa, still sitting or led but it’s a darn sight better than being in bed all day. I’m really happy about it 🙂 

My walking is getting better, I’m making myself walk around the home everyday to try to strengthen my legs and body. It’s hard work and very painful but I’m determined to not let my legs keep withering. 

I’m happier in myself, things in my life are calming down a lil, the puppy bringing much amusement and my better health are hugely impacting on my mood. I was even singing the other day! Something I do when I’m happy and I’ve not done in a very long time. 

All in all I’m feeling pretty good, and hoping this will only continue 🙂 

Here’s a pic of Diago  acting innocent after chewing a blanket :,) 

 

Settling

I’m happy to say I am now feeling much better from the flu, bronchitis and sinus infection! 

My body pain, spasms, limb locking etc have calmed down. 

I’m very lucky that I can rest as much as I need to. My son understands that I’ve been very sick and I have had to spend so much time asleep. I don’t feel wrecked with guilt so much these days and allow myself to rest and get as better as I can. 

Plus plus, only 9 days until pup arrives! He is sooo beautiful and it’ll be brilliant to have him as a member of our family 🙂 

I have an appointment at the eye hospital on 7th April for tests on my near blind left eye. 

Now normally I’m fine with examinations/ tests/ appointments I’m a ‘ok I need these tests so I’ll get through them’. 

I for once have an issue with these tests. 

I hate having my eyes touched/blown on/drops being put in them, and guess what three things they’re going to be doing..? Yes, all three of those things! 

It sounds ridiculous, my mate was laughing at me getting twitchy about these tests..

 “Stace, you’ve had cervical cell treatment, blood tests, brain tests, constant body prodding, tests on you legs, arms, back, everywhere.. And you’re freaking out about eye drops??” 

Ahah, yes it does sound silly but my eyes.. Being messed about with in any way makes me jittery. I can’t even touch my own eye let alone someone else probing them! 

I’ll do it because I have to, I need to find out what is going on, but I am not looking forward to it! 

No pun intended 🙂 

2015

I like the fresh slate of a New Year. Everything that happened is in the past, even something last week happened last year.

Just a day after my last blog entry I was put on a 3 month course of antibiotics for a sinus and ear infection as I woke with a swollen face and leaking ear again.
My Doctor is determined to rid these infections I’m constantly having by having me on a strong dose for two weeks then just one tab a tab after that.

I think this an excellent idea, especially as these infections make my conditions so much worse. Fingers crossed it works 🙂

As my Neurologist appointment is on Friday my doctor won’t try any other new meds until after the appointment, which I understand. I have a telephone appointment with her a few days after to discuss what happened during the appointment and where to go from there.

I’m looking forward to the appointment and do hope it will help me. I’ve not had much luck with specialists, both my rheumy and pain clinic signed me off as unable to help. This really frustrated and exasperated me, the very people who were supposed to help couldn’t figure out how to.

But, the neurologist appointment brings new hope. They may be able to help me and make things a lil easier, or at least give me a solid diagnosis that I can adjust with.

I’m pretty tired at the moment as I’ve hardly slept in days, there’s just no way you can sleep when you’re in pain. I will eventually crash out and sleep, fingers crossed this happens very soon! 🙂

Pain and achievement

I was laid in bed yesterday trying to think about anything but the pain I was in, but then as is often the case all I could think about was pain.

My pain levels are through the roof at the moment, and for the first time in a long time looked on the interweb for any foods I could introduce or new or long standing pain killers I could suggest to my doctor.
Unfortunately I found nothing new, and although I have had many people suggest medical marijuana it’s not legal in this country, only in spray form for cancer and ms sufferers.

Would I take a marijuana tablet if I could? The truthful answer is, I would try anything that would lessen the 24/7 pain I am in.

What a lot of people don’t realise is constant pain is absolutely exhausting. It literally takes away your energy, your movement and causes palpitations. The smallest tasks, such as making a cup of tea can lead to shaking limbs, exhaustion, breathlessness and more.. Every thing you do takes your energy and gives massive pain.

I had a letter from my pain clinic consultant which said she doesn’t think she can help me as my pain levels are too high, too debilitating and my body doesn’t work well with the opiates I am on, ie hardly work.
What she does again suggest is I go as an inpatient to Baths pain management centre and they may be able to help me..

First off, how the heck am I supposed to get to Bath? It’s a 40 minute train journey from here, not including getting to the train station, waiting for the train, the journey to the hospital after the train… Sitting up and being in a wheelchair the whole journey which shakes my legs and back up so much I can barely stand for days.
I don’t want to be stuck in a bed, noise, lights people, bustle around me and a kinda guinea pig they will poke and prod.

Apart from the mumbled, usually a few days..I have been given no real time scale how long I would be in hospital which is never good.

But my options are, I put up with the pain and continue to look for painkillers that don’t make my body scream in pain anytime I move a body part, or I go to the hospital which would cause a massive crash and be in there for an uncertain amount of time.

They’re not good options, and this upsets and angers me.

Because I desperately need to reduce my pain levels but I am now being told my pain clinic can’t help me so I’m back to square one.

So what am I supposed to do? How am I going to live in constant bodily pain day after day, year after year?
My hands and feet are now swollen again and laying down doesn’t do anything but make the whole body throbbing worse.
It’s difficult to do anything at the moment, even breathing causes pain!

I will continue to look on the web for anything that may help me, fingers crossed I’ll find something.

On a positive note, I am extremely happy about something I’m managing to do.

I have been reading, reading!!
I had the idea of writing down what had happened during each chapter so I can look back on it when I forget.
So I downloaded a book and it’s exactly what I am doing, writing as I read.

This is a huge development, yes I constantly forget what the previous paragraph or page said but I can get a memory jolt by looking at the notes I’ve written.

I am so so so happy about this! As I’ve said before I was a total book worm, and not being able to read has been extremely difficult for me.
Reading was always my escape, from stress, problems, illness and life. It relaxes me, makes me feel comfortable and stories, plots, style of writing fascinates me.

So I am escaping the pain for a lil while by reading and I am very happy doing so. It’s good to have something back in my life that I have really missed. Good to feel I am achieving something despite the pain I’m in 🙂

Sigh of relief

Well I’m finally done with tests for awhile! Phew 🙂

I had my x-Ray, ultrasounds and bloods without any fuss and pretty quickly! I’m very impressed and the staff were really nice, especially the nurse at the Rhuemotologist. She remembered me so we had a lil gossip together which was nice, she’s a real joker too 🙂
The only draw back is I can’t see my rheumotologist until the 26th September! Well I wasn’t pleased so I’ve been put on the cancellation list and will be given an appointment as soon as they get a cancellation. Still that could be a month away so because I was obviously not happy they told me I could phone my doctor for the results in a few weeks. Now why they didn’t say that in the first place I really don’t know, I had to say I wasn’t pleased and obviously not take what they said for an answer before they told me. Now I can be a lil stern, shocking I know, when I feel things are being treated wrongly, but what if someone quieter would’ve just taken their first answer, they would’ve had no cancellation or doctor option given to them. That’s just wrong, so I mentioned maybe they should give people the other options as they’re saying how long a wait they have.
The receptionist was not impressed, but I didn’t break eye contact (or my habit raising eyebrow) and she just pursed her lips and said no more.

Anyway at least I will know the test results even if I can’t start treatment straight away if they find anything. And the main thing, no tests for awhile, yay! 😀

It’s been a long achey day but I’m now laid up resting. I spent a lil while with my son watching a programme he’s gotten me into which I’m very surprised at as it’s anime. I’m not a fan usually but it’s actually really good and I’m hooked! Plus I get to spend time with him and that’s always great! 🙂 but darn that weird, drawn, Japenese programme for making me like it! Naughty thing… 😉

I’m resting up, eating, watching a film and moving as little as possible for the rest of the night. I’ve been awake since 2am and I’m rather tired now.
Plus I woke with a heck of a jump! I woke due to pain in my side, so I gently eased myself onto my back pressing into where it was paining as it eases it a lil. Well, as I turned over I saw this massive white long object with a huge white circle on top of it looming at the end of my bed!
I instinctively threw a pillow at it, dived for the lamp switch and nearly out of bed when I looked over my shoulder and realised..
It was my stand up fan.
Yes, in my sleepy state I had totally forgotten I had moved it to the end of my bed the night before to get more fresh air onto me as I slept. I burst out into fits of giggles, holding my side that was now really hurting due to my moving quickly and my body half in and out of bed and trying to stifle the bursts of noise so I didn’t waken everyone!

I’m very pleased it was my fan and not the 5ft glowing monster it appeared to be in the dark. And well if it had of been I’m sure my feather pillow would’ve sent it cowering in fear…
Not.
;D

MRI

My MRI went quickly and smoothly. My Father and partner came and my partner got me a coffee and a lil cake before I went into the waiting room, yum 🙂

I was a tad embarrassed that the radiographer had to help me out off my wheelchair and onto the scanner table, then lift my legs to put a pillow underneath. But I guess I need to get used to that sort of thing.
The machine was really loud, despite my noise reducing earphones but apart from that and the neck spasm that jolted my head slightly during the scan all was fine.

Just a few weeks wait for the results now. I have requested to see my brain scans, and the neurologist will do so on my follow up appointment. I have a fascination of seeing it, it’s my brain and I have the right too so I am. No stamping of feet needed either.. 😉

Home resting back in bed now. I want to make a loaf of bread today if my right hand will let me. It’s something I do every so often, I find baking very therapeutic which a lot of people are surprised by. The fact I bake, not the therapeutic bit 🙂
I also feel a sense of satisfaction making food from scratch and it being eaten. I can’t bake as I used to, but I do when I can. Sitting on my perching stool and pounding dough is great free anger management 😉 Freshly baked bread mmmm it’ll make the flat smell great too 😀

I have sorted all my hospital appointment letters, doctors and specialist diagnosis letters, ESA award, physio, home move documents etc ready for my Atos home assessment tomorrow morning between 9-11am. I really hope it goes ok, as I’ve said I’ve nothing to hide and I’m not concerned about that. Just that they believe me and my letters and be able to give me extra help.

When I move I will need a carer as my son isn’t moving with me and I wouldn’t have him caring for me in that situation. Them granting me pip will enable me to have a carer, so tomorrow’s appointment is really important for me.

Fingers crossed and gypsy luck it will all go well and I’ll my assesser will understand and believe in my conditions. I hate the fact I have to prove myself, but I can understand why I have to with all the scammers they have to deal with. Those people have put people like me in the situation of having to prove ourselves, I resent that. But it’s no good getting annoyed, it’s how things are so I just need to be myself and be honest. Two things I’m good at.. 🙂

Stifling the whirlwind

Yesterday was a nice day.
My limbs were working a lil better and I was able to sit in the front room when my sister and mum came around. That’s progress 🙂

We chatted and caught up on everything and everyone, my son was here and his girlfriend too which was great.
I have to say my sons girlfriend is lovely, I really like her and she takes over the cooking, cleaning etc when I’m really unwell. My son and her were friends for many years before they started a relationship so I’ve known her for years, she’s always popped round, been here a part of his life and my knowing her. She works, in the same place as my son, but will come back and cook tea, shop, tidy up which is brilliant and much appreciated. They run and look after the flat most days and I thank goddess they are both so thoughtful, helpful and understanding. Many 19 year olds would scoff at doing all they do, and be clubbing, going to pubs getting drunk, and still having teen tantrums and sulks. I know many that age that do! But my son and his girlfriend think nothing of running the flat, getting electric, buying items we need and still looking out for me. They have the healthiest relationship I’ve ever seen anyone of that age, and older. I am incredibly lucky and I am so very proud and thankful for them both.

I am paining quite badly today and still finding it difficult to get about, but operation cleaning and sorting the flat is a go go today and can’t be put off. Not with my assessment or my room still looking like a bomb has hit it since the change around. I can’t do much but my son is going to do the heavy stuff and I can sit and tidy. I’m itching to whirlwind sorting/cleaning everything as I used to but I can’t.So I’m drowning the voice and itch with tea and being good.. For now! 😉

I am still on my healthy eating diet, no choc, crisp, biscuits and now I hardly crave it. If I do I will have it, but so far so good. The strange thing is I’ve developed a massive craving for grapes, I cannot stop eating them! I said to my son about it and he said that grapes are sweet and full of sugar so that’s probably why I can’t stop eating them now I’ve stopped eating sweet foods. It makes sense but still, I’m eating punnets full in a couple of days. I guess it’s much better than bars of choc and cheesecake but I may well wake up looking like a grape at this rate! A big purple grape head with eyes and a mouth…
Ok, a bit over the top but the thought amused me 🙂

Tomorrow is my long awaited MRI scan. It’s at 9.40am which is good as I won’t have all day to wait for it. Hopefully it won’t take long and I’ll be back in bed by 11am, it takes longer to set up and shut down the machine than it does to have the scan! I will think nice thoughts as I lay clamped into the machine, I’m not nervous and won’t be tomorrow either. I feel happy I’m having it done and in a month should know if anything else is going on. In a months time so many things will be made clearer regarding all my recent and upcoming tests. It’s a positive thing, the waiting is nothing compared to knowing the full facts. And while I am in the MRI machine I’m sure the grape craving will be in full force and I will drift off and think about how I am going to eat loads as son as I get home. Happy and productive thoughts 🙂