Skip to content

You know when you’ve become a regular when…

I know, I know I’ve neglected this for a while. I guess I spent a few months coming to terms with things and riding the rollercoaster that is taking many strong medications and dealing with what they are doing to my mind and my body.

My life is now punctuated with regular hospital appointments and, sadly, blood tests (GOD I HATE BLOOD TESTS), my day begins with a breakfast of 11 tablets and ends with a cocktail of 7 (possibly 8 if I need the sleeping pills).  However, I am now accepting this as part of life and not allowing it to define my life.

I am absolutely rubbish at taking a nap/rest.  I know I should and I know I feel better when I do, but I have a busy mind and I find it difficult to switch off, I also have a zillion things I want to get done before Izzy gets home from school and the school day is actually pretty short.  So this is something I need to discipline myself to do.

I was at the RVI today and realised I was now a regular. The nurses who recognised me said hello and asked after my daughter, the doctor’s are on more familiar terms and I realised I’d followed the progress of the Opthalmology refurbishment too closely when I remarked on the colour of the gloss and oohed about the new chairs in the waiting room.


It’s been a while…

Since I posted on this blog, life has kind of got in the way, with hospital appointments, school holidays and a new business website to develop.  This has all settled down a bit now so I feel a bit freer.

I had my rheumy appointment 2 weeks ago, having waited 4 months I was disappointed not to see the Professor I was meant to see and instead someone unfamiliar with my case (he didn’t even know I had had a MRI scan – ordered by the Professor – but he dug it out).  I did come away from the appointment feeling a bit better though as they are pretty sure that the issue is just manifesting itself in my eyes at the moment, although there are some spots of inflammation in the brain (but as I don’t have any symptoms or headaches and I’m on the treatment anyway they didn’t think there was cause to worry).  I’ve been put on daily aspirin due to my ‘sticky blood’  and have basically been told that there are no forms of contraception (other than coil which I refuse) that I can take at the moment due to my blood/medication/blood pressure – great! Still working on the vasectomy with Mr!

I saw my eye doctor today, I had to admit to him that my left eye is playing up again.  He couldn’t investigate it thoroughly as my eyes weren’t dilated, but he decided to up my steroids again – ARGH! I had just made it down to 5mg (and normal sleep) last week and now I’m going back to 10mg again and increasing the mycophenalate. Just as I thought I was getting somewhere with the meds I go backwards again.

Anyway, I feel ok in myself, if a bit tired and I am going to try and stay positive 😀

Beach Walks, Side Effects and Jam Stalls!

It’s been a bit of a stressful week, but more due to business issues rather than health – for a change.  I’ve had a nice weekend though seeing friends – lunch with the girls yesterday and a walk on the beach with my best friend and daughter today which is what’s needed to take my mind off things!

There have been a few health issues I’m getting anxious about which I’m putting down to side effects.  My cellcept dose was increased to 1000mg twice a day on Tuesday and I’ve not experienced any of the usual sickness/stomach issues but I’ve been having real problems with my legs.

About 18 months ago I was told I had benign fasciculation syndrome as a result of twitching in my legs, it’s a really horrible sensation like the blood in pulsating and the veins are sore. I’m not convinced it was ever a muscular issue, but that was the diagnosis before all the recent problems.  This faded and practically went away a few months ago, but over the past week my legs have been really bothering me, particularly my left one.  I have a real feeling of stiffness behind my knee and a pain in my calf and thigh as well as lots of twitching, I’m not sure if it could be caused by the medication, the immune system disorder or be something else but I am anxious about it and will mention to the Eye consultant tomorrow who I’m seeing regularly to monitor my meds.

The other side effect which is freaking me out is hair loss. My hair is falling out quite dramatically.  I have long dark brown hair and I’m seeing it all over the house (and don’t even mention the shower drain to my husband). I can cope with this to an extent, but not if I start getting bald patches, please don’t let that happen.

I see the Rheumatologist on the 23rd October and frankly I can’t wait, I still haven’t had the results of the MRI I had in August (so I’m guessing I don’t have a brain tumour or anything sinister – at least I’m hoping not!) and I’m hoping he’ll be able to clear a lot of things up for me and maybe even give me a diagnosis.

I had my flu jab on Thursday too, so at least I’m protected against that now.  The flu clinic was a novel experience – about 50 pensioners and me, it was like an OAP convention (they even had a jam stall!).

Lovely Autumn Day

Today was such a gorgeous Autumn day, the sun was shining, the sky was blue and the leaves were all changing colour on the trees.  We headed off on a lovely walk in the woods in Northumberland and it was great to get some fresh air and get out and about and take some photos.   I’ve been a bit up and down this weekend, both my husband and daughter have had rotten colds over the past week and I think I’ve got some of their viruses, I don’t have a full blown cold but I heard that prednisone (that nasty little drug) can disguise the symptoms of illness so I’m making sure I get lots of rest.

I’m pleased to have NO hospital appointments coming up this week, although I do have to get the flu jab on Thursday so not entirely escaping needles sadly.

No sex please…

I’m British!
Today I saw my GP to discuss the matter of contraception, not that it’s a pressing issue right now but just in case I ever feel like ‘it’ again! After a bit of googling of my own I discovered that Cellcept is not great with the contraceptive pill and another form is recommended (you would have thought the medical professionals would have advised me of this when they prescribed the drugs).  I’m so terrified of getting pregnant I even suggested getting my tubes tied, but he said my body was going through enough right now and if I was that serious about that sort of route then my husband should be considering having a vasectomy (yeah, fat chance of that happening).  The GP  suggested the implant, but then after consulting a hefty book he discovered that didn’t work with cellcept either.  The only options available to me are the coil (which I’m not having ever, I simply refuse to have that) or the Depo-Provera injection.

I can handle an injection, that’s fine but upon reading the literature it says “If you have risk factors for osteoporosis it is normally advisable to use another method of contraception… these factors include long-term use of steroids”.  So what’s ‘long term’?  I’ve been on prednisone for 2 months and my consultant said yesterday they will keep me on this lower dose for ‘some time’.  I already take meds to prevent osteoporosis, so I’m guessing the Depo injection might not be the best option.  This is not leaving me with many options other than my current one – abstinence (which if I’m honest is fine by me, but doesn’t make for a great married life especially for my husband).

So I rang the phone number on the back of the Depo leaflet and spoke to someone there who said that “Depo doesn’t interact with any drugs” which is blatently not true.   I guess I’m going to wait until I see the Rheumy professor because I’m hoping he might have some ideas…

I’m scared because the knowledge just isn’t there about what interacts with my drugs and who the heck am I meant to talk to about this?

Well that’s all a lot more positive.

Having a much more positive time at the moment. Yes, I’m full of aches and pains and no, I’m not sleeping properly but today the consultant permitted me to have a glass of wine – YIPPEE! You have to take solace in these small things.  My steroids are being reduced again to 7.5mg tomorrow – I can’t wait to get off those nasty little pills.  Next week the cellcept goes up, but I can honestly say I’ve not noticed any side effects with that at all.

I had a fun weekend,  on Saturday we went on a segway experience and I haven’t laughed so much in ages – it was super, great fun.  Afterwards we went to see Killing Them Softly at the cinema which I really enjoyed too and I ate lots of Haribo too! My goodness me on Sunday I paid for for having such an active Saturday – it was all I could do to get out of bed and function, but sod it Saturday was worth it.

Generally feeling much better about things, all I need is for my business to stop stressing me out and I can hopefully get on a more even keel, just the small matter of a whole new ecommerce and fulfilment system to resolve in the next 2 weeks (and breathe…).

Funny Old Week

Yes it has been a funny old week. I’ve been up, I’ve been down, I’ve been all around and I have come to the conclusion that I’m bloody well damned if this stupid illness is going to define my life anymore.  Throw your pills at me, throw your insomnia at me, I’ve got things to get on with, I’ve got people to see and, ok I might have to make some adjustments here and there to allow my body to accomodate it, I’m going to get on with it thank you very much.

I’ve never responded well to being told what to do, it’s a big part of why I’m self employed and over the past 4 months I feel as if my life is being dictated by doctors (albeit well meaning doctors).  Of course I’m going to do what they tell me, but I’m not going to let them dominate my life anymore.   I guess a few events hit me this week and made me think…

On Monday I had my regular opthalmology appointment, more bloods, more tests and the conclusion that my body needs more time to adjust to the medication levels and so to keep things as they are for another week before tapering the steroids again next week.  He advised me that the recent bloods have confirmed I have ‘lupus anticoagulant’  which I understood to mean that my blood is liable to clotting and then told me the rheumatologist would be exploring that with me (this reminded me I still didn’t have this appointment).  I left the appointment a bit scared and, with the absence of a rheumy appointment, googled this ‘lupus anticoagulant’ and terrified myself even more.  I rang the the rheumy secretary and, as suspected, they have nothing booked in for me and it looks like it’s going to be a long old wait before I can have my anxieties about this alleviated.    I spent Monday night a mess, really worried, really depressed, fed up with my rubbish body and generally feeling sorry for myself.

On Tuesday I woke up and decided this was silly, that I have to focus on what’s important in my life namely, my daughter, my husband, friends/family and my business.  In the afternoon I had to go into my daughter’s class to meet her teacher and see her classroom with all the other parents. It became apparent to me that I really had no idea what topic she was doing at school and I realised I’ve been so worried and focused on my situation I’ve not had the time and energy to dedicate to her life, of course I spend time with her and talk with her, but I’ve not been ‘all there’.  It also became apparent that she is finding the transition from reception to year one far more unsettling than we thought she would and I’m sure this isn’t helped by the anxiety that has been at home – no matter how hard we try to shield her from the worry, she’s not stupid  and she (like me) is a sensitive soul.  Tuesday evening I reminded myself that I’m a mother first and foremost and that I need to be strong,  if I fall apart our family unit suffers (and besides the housework doesn’t get done!).  I had 7 hours natural, uninterrupted sleep on Tuesday night… the first and only night since starting steroids.

So the beginning of the week gave me lots to think about, I realise that in order to maintain my strength and keep living my life I need to discipline myself.  If I’m tired and achey I need to rest, I need to not feel guilty and lie down, watch some TV or read a book and chill out.   I run my own business which, although a blessing in flexibility, brings a whole load of other pressure (hey now’s a really good time to develop a whole new ecommerce system) and I need to be sure to not overload myself.

Wednesday onwards has seen me being gentler on myself and the other people in my life.  In fact yesterday afternoon, right in the middle of the day, I went to the cinema with my best friend to see Queen Of Versailles (loved it, what a tragic/funny/interesting film).  It felt so naughty to be sitting watching a film when I ‘should’ be working, but was fun, a good change of scene and a break.  On Wednesday I snuggled up and watched Downton Abbey at 3pm in bed. Today I’m ok, I have energy – for now.

So during this funny old week I have learned there’s no point focusing on something you can’t change, as it won’t change anything. Focusing on my illness depletes my already limited energy reserves and is only serving to make me depressed, it’s doing enough damage to my body without me allowing it to damage my mind too.

I guess you could say, this week I have learned that this condition (whatever it might be as I still have no firm diagnosis)  is now part of me, it’s part of my life and is likely to be so forevermore.  I guess you could say that this week, I’m reconciling and accepting my situation and deciding to put it to the back of my mind rather than allowing it to sit at the front.