There has been quite a few developments with my health since the Spring, and the journey has been heavy, over-whelming, and at times a little frightening. That probably sounds like I'm being over-dramatic, but I'm not trying to be; it's just the way it was.
If you've been following my blog for a while (and have a good memory), you might remember that at the start of the year I had a bunch of blood tests done to check for, or rule out, any underlying inflammatory conditions that could be contributing to my health problems. At the time, I was having difficulty sorting out an appointment with the spinal specialist to chat about the results, but I was eager to hear it from him because I didn't believe my useless GP when he told me they were negative.
Well, after a four month wait, I finally got an appointment with the specialist in late April or early May. He was shocked by what my GP had told me, since the tests showed a few abnormalities, and an underlying inflammatory condition! Why was I not surprised? He told me I most likely have some form of arthropathy, which is a collective term for inflammation and disease of the joints. To find out for sure, I needed the specialist help of a rheumatologist, so I was referred to a colleague of his at the same hospital, and more blood tests were ordered.
Two weeks after that, I met with the rheumatologist for the first time. Being a first consultation, that appointment was mostly about gathering all the information about my health, and medical history, something I've done so many times I practically have a speech memorised. He looked through all of my CT and MRI scans from last Summer, and while they show a lot of inflammation in my body, he didn't see enough to send alarm bells ringing. "Get this girl to intensive care, NOW!" Like the spinal specialist, he believed it was likely I have some form of arthropathy and not something along the lines of rheumatoid arthritis. He wanted to see the results of the new blood tests to gather more information before ruling anything out, though, which were, typically, scheduled for the following day. Sod's law!
So, the next morning I had my blood tests. Or, I should say, the first round of blood tests. I had eight vials of blood harvested , and went on my merry way, a little worried about what the tests might find, but blissfully ignorant to the fact things were about to get ugly.
Less than a week later, I had a missed phone call from my Doctor's surgery, early in the morning. I phoned back in the afternoon, and the receptionist told me I needed to have more blood tests done. I was a little surprised, but I arranged an appointment anyway, and spent a few hours worrying why I needed to have more. What was wrong? What had they found? I eventually managed to push all health and medical related thoughts from my mind, and by half eight, I was even giggling away at The Big Bang Theory. Then, just before 9pm, the house phone rang...
We don't get a lot of phone calls on the land-line at that hour, since everybody uses their mobiles these days, so I had an unsettling feeling in the pit of my stomach. The fear only grew as I heard the thunderous sound of my Dad's heavy footsteps climbing the stairs to give me the phone. He didn't know who was calling, but thrust the phone in to my hand. It turned out to be a doctor from the surgery. The doctor who had phoned early in the morning, and one I'd never met or spoken to before.
It was 9pm on a Thursday night... I knew that wasn't a good sign.
Doctors don't phone patients at that hour if nothing is wrong.
It scared the shit out of me.
She told me that the first lot of blood tests revealed I have severe calcium, vitamin D, and phosphate deficiencies, and that she needed me to get my kidney bloods tested ASAP, because the deficiencies could be a sign of a couple of serious kidney problems. Well, naturally, that last piece of news frightened the crap out of me. I kept my cool, but inside my heart was hammering and my mind was going a mile a minute.
I tried to reassure myself that it wasn't all caused by something as serious as a faulty kidney, because I knew of two simpler explanations. One, I've been house bound for almost four years now, and have barely made it out of the house all year, so I've not been getting the vitamin D we all need from the day light. Two, I've not been eating enough foods rich in calcium because most dairy products make me ill, so I'm pretty certain that the calcium deficiency is just down to my diet. The doctor agreed I was probably right, and mentioned putting me on vitamin replacement tablets if the kidney bloods came back clear. She then arranged appointments for the blood tests the following week, and another to give me the results over the phone. She seemed really on the ball, asking lots of questions, taking an interest, explaining the situation in detail, and suggesting what might happen next. For the first time in four years, I felt like a doctor on the NHS was finally taking me seriously and seemed to know what they were doing! I don't know if she's a permanent doctor at my surgery (she's new), but I might stick with he if she is.
So, after that phone call, I was pretty shaken up- literally, I was physically shaking. My blood tests weren't for another five days, and I couldn't stop myself from over thinking and worrying myself sick all week. I lost a lot of sleep. and I was so stressed that I came out in a rash.
On the Monday morning, I had the blood tests done, which took all of two minutes. I was told they'd phone me ASAP if the tests revealed anything seriously wrong with my kidneys, and then I was free to leave. (Thankfully, after another four days worrying myself sick, on the 3rd of July, I found out that those blood tests came back clear and my kidneys were perfectly fine! To say I was relieved is an understatement!)
A couple of hours after those blood tests were taken, I travelled further afield for an appointment with the rheumatologist. Even though I knew about some of the latest developments from a letter he'd sent me the same week the GP broke the news over the phone, I wasn't quite prepared for everything I would hear.
Doctor C sat me down and said it was highly likely that the inflammatory condition I have is spondyloarthropathy, which is a general name for any joint disease of the vertebrae column. Whether anything can be done to ease the pain, I don't yet know, but he told me I will almost certainly have aches and pains in my bones and joints for life whichever inflammatory condition I have. I've had them regularly since I was twelve or thirteen, and while they're a bitch when they really get going, I can live with them. They're far more manageable that the constant spinal pain I have from the bertolotti's disease (fused spine) and the herniated discs, that's for sure.
Then, he moved on to the deficiencies. This was when things got all too real. I have such severe calcium, vitamin D, and phosphate deficiencies that I've developed something called osteomalacia- softening bones. Basically, the adult version of rickets! I was fucking speechless. I couldn't believe it. I've never even heard of an adult getting rickets before, not in this day and age, anyway- but, that wasn't all. Along with the deficiencies, I have a problem with my parathyroid, which is something which controls the calcium in our bones, blood, and nervous system. When there isn't enough calcium in the body, it starts taking it from the bones instead, which weakens and softens them. My parathyroid isn't working properly, so it's making it even harder for my body to use and store calcium properly, so it's all led to osteomalacia.
I've only got myself to blame for this one.
When I opened up about my intolerance to dairy, the doctor asked if I eat dairy substitutes, like soya. Until then the thought had never even occurred to me! I'd just cut out the foods that made me ill with no thought about what the lost vitamins could do to my body. All I wanted was to keep the stomach cramps and sickness away. I didn't seek help from my doctor like I should have done, and it's finally caught up with me. I can't believe how stupid I've been.
Thankfully, the doctor said he should be able to reverse some of the problems in time. He put me on a three month course of vitamin D and calcium replacement tablets, that I started soon after that appointment, and will be on until at least mid-October. At the moment I'm on one Fultium-D capsule and one Adcal tablet a day, on top of all my painkillers. The Adcal tablets are about the size of a giant button, have to be chewed or sucked, and taste like chalk. Tutti fruity flavoured chalk. I'm still struggling not to gag on them every day. Anybody want to take them for me?? No?
He's also urged me to get outside for at least ten minutes a day to get the vitamin D I need from the daylight- but that's been easier said than done since most days I struggle to even get down the stairs. I'm doing my best, but I haven't quite managed every day yet. One day at a time...
I'm having to have more blood tests every couple of weeks so the doctors can monitor my bloods and see if the tablets are working. It's a good thing I'm not scared of needles! The last batch of these blood tests will end in October, and I've got another appointment with the rheumatologist before that, near the end of September. I'm not sure what the next step will be after that, but hopefully, the specialists will have something up their sleeves that could make a difference this time. I just have to wait and see.
So, now the dust has settled a bit, I'm left feeling like a complete idiot for getting myself in this mess. I've not been looking after myself properly for... well, quite a while now, and it's finally caught up with me. I don't know what I was thinking.
I guess I never thought things could or would get worse than they already were, but I've definitely proved myself wrong on that one. Things can almost always get worse. You can hit rock bottom and then get crushed under the weight of all the rocks above it, especially when you don't take care of yourself.
I'll be honest; I've not felt so well this past year. My mental health has been okay, even though I've been so stressed and worried, but my physical health hasn't been great at all, The pain has been raging something fierce in my back, legs and bones all year, and it's been draining the life out of me. My limbs have been shaking. My legs are so weak I keep losing my balance, and I've been having dizzy spells. The circulation in my legs, feet, and hands has been getting worse, and every now and then I've been losing sensation in my fingers. My lips have turned blue and icy cold on a number of occasions, and let's not get started on the broken wrist scare I had a few weeks ago... (Long story).
On top of all of that, so many foods have been making me ill and the smell of others keep making me feel nauseated, so I've not been eating properly. I've jut not felt up to eating much. Mostly, I've been getting by on one meal a day at most. I know that's not healthy, and I know it's contributed to some of the deficiencies, so I'm trying to sort myself out before my body gives out. I need a big kick up the backside. And maybe a new body! I must have done something really bad in a past life to make mine hate me so much!
As I've been dealing with all of that, I've spent most of the year stuck in bed in my pyjamas. This is the reason I've not blogged any outfit posts in months; I've not had any outfits to share. You wouldn't want to see me in my pyjamas with unwashed hair and slightly grey-tinged skin; trust me! I've only been dressed in proper clothes when I've ventured out of the house, which hasn't been often. Between January and July, excluding medical appointments, I probably left the house less than a dozen times.
Since everything unfolded last month, I've been doing my best to push through the pain as much as possible to get out and about more. I think I've left the house more these last few weeks than the rest of the year combined! My brother-in-law is away on a detachment in Dubai until January, and I've been doing my best to push myself to my limits to keep my sister company on the nights / weekends she doesn't have plans or company. They recently adopted a two year old German Shepherd, so I've joined my sister on a few gentle walks in the country park to get my vitamin D, and I'm hoping to keep it up maybe once a week or fortnight. It puts me out of action for a few days afterwards, but I think it's doing my mental and physical health some good. I'm looking forward to some gorgeous walks when Autumn sets in.
Aside from walks, we're also planning lots of things to do from now until Christmas, mostly to keep my sister busy while her hubby is away, but also because I need some fun things to aim for and ways to escape from my Groundhog-day-life. There are a few local places we want to visit, crafts we intend to try, and some Christmas foods the brother-in-law wants us to make ready for his R & R in December. He won't be home for Christmas, but he'll be back for two weeks in early December, which is close enough. I might blog my way through some of them, but we'll have to wait and see!
I think I should also apologise for the lack of decent blog posts this year. I know my posts have been shit, and there have been too many days in between them. I've got hundreds of ideas for posts, but I've been so drained and stressed that my head has been all over the place. It hasn't made it easy to write, and I've not had a lot of strength to take blog photos, either. I hope I can get back on track this Autumn because I'm raring to go. I promise I'll do my best!
If you've made it all the way to the end, thank you for putting up with my boring rambles. I didn't mean this post to be so long; apparently there were more thoughts that I needed to get out than I realised. I already feel like a weight has lifted, so letting it all out is just what I needed.
Before I go, I just want to say that even though I've got a lot to deal with, I am doing okay, and I won't be giving up the fight any time soon! I will never let it break me.
Thanks for reading.
