Living with JHS

 

Any of you who have seen the musical “Oliver!” will know that today’s post title is a play on words of “food, glorious food”. Fortunately for me though,  my tablets are not hot sausage and mustard (I don’t like mustard).

Despite the joke of my title, while I was taking my morning pills the other day, I figured it would be a good idea to share a snapshot of the pills I take on a daily basis, in the chance that they may help you as well. I know it doesn’t look a pretty sight, regardless of what angle I took the picture at. Therefore, for anyone who doesn’t like taking tablets and/or really struggles to take them (I used to be of them), I probably would suggest not reading any further – it may make you cringe!As I said, I used to be the type of person who wouldn’t be able to take tablets at all. They just used to get stuck in my throat, even the tiniest of ones, (and I imagine a lot of you will know what that tastes like). What can I say? It certainly put me off taking tablets again. My solution? Ask for everything I could possibly need in medicine form – I did try soluble tablets but, boy, were they foul! (sorry if any of you take them, just my personal opinion). However, I soon realised that the pain I was experiencing wasn’t going to go away if I was only to take medicine based medications, or not take any at all, so I soon started making myself take tablets – only when necessary mind! I was definitely more the reactive type person when it came to pills, rather than the proactive type.

I would forego medication for my JHS, until my “bad days”. Why? Because I felt that if I only took my tablets when it was bad, then it would mean that they would work a lot better. You might understand where I’m coming from a little bit more if you did biology at school, otherwise I don’t really know how I can explain it. I guess I felt that my body didn’t have time to get used to the cocodamol in my system (the only thing I was told upon diagnosis that I could take other than paracetamol and ibuprofen) if I didn’t take it all the time. This worked a treat for me at the time, because it meant that I got used to the normal day-to-day pain that I felt, and soon started being able to ignore it – yippee right?! That also meant that I knew what levels of pain I would begin having to take medication for.

What changed? Well, you all know (if you’ve been reading my posts) that I’ve been diagnosed for 3 years now. My first year was spent (as noted above) trying to come to terms with the effects of the condition – knowing what I could and couldn’t do, how I reacted to different activities, learning what made me feel better on a “bad day” other than medication etc etc. I then spent the majority of last year in control of my condition, having figured the ins and outs of the condition in relation to me, rather than my condition controlling me which it had begun to do well before I knew the cause. I still needed my cocodamol now and again, but it was a lot less frequently than it had been and for that I was thankful… Although it did mean that I was able to take tablets a lot better! However, towards the end of last year, I begun to get a lot worse again – probably a lot to do with the cold weather, despite it being the mildest December/wintertime we’ve had, and personal circumstances as well (family issues, problems with university, friends that weren’t really friends etc). So, when it got to January, I decided I was going to become a more proactive person when it comes to meds – that way I can gain some control again and continue to have control on a day-to-day basis.

After all that, you’re probably wondering what on earth are all the tablets in my little day box – yes, something I had to go out and buy upon my proactive decision, so I remembered what I needed to take, and what time, when I first started taking them. So, in the pictures, you will see 19 tablets. 5 in the morning; 4 at noon; 6 in the evening; and 4 at bedtime. The different tablets include:

• Naproxen
• Paracetamol
• A-Z Multivitamins + minerals
• Kalms
• Cocodamol
• Ibuprofen

Now, there are is a mix of medication and herbal remedies here, some of which will be available for you to buy without seeing a doctor or having prescriptions. I’ll run through what each one is, and what it does. You’ll have to bear with me, as obviously I’m not an expert, but I will try my best.

Many of you will know that paracetamol, cocodamol and ibuprofen are pain-relieving medications and are available to buy over-the-counter (bearing in mind, I am in the UK and it might be different where you are!). They help to reduce the amount of pain you are in. I take 2 paracetamol in the morning, and 2 ibuprofen in the evening – to split up my day but ensuring pain is reduced and also to ensure that I am not taking the same thing all day every day. As some of you will be aware, I have been having a bad few weeks with my JHS and so this is the addition of cocodamol, which I still add in on my days off. I take these at noon and at bedtime. Noon because I’ve had my daily dose of paracetamol in the morning, which I don’t like to alter and you can’t take cocodamol and paracetamol together. I then take it at bedtime to try and ease the pain during the night so I can have a better nights sleep.

Naproxen is a type of anti-inflammatory medication, and so is another one that helps to relieve pain. I get this on repeat prescription, but I think there are some that are available to buy over the counter (don’t hold me to it though!). I take two in the morning, and two in the evening (each table is 250mg) and, for me personally, I take it because it’s supposed to reduce the swelling in my joints and therefore reduce the pain I’m in.

A-Z multivitamins + minerals is something I came across when looking into whether there was any vitamins available to help me with my lack of energy. It is not always known as this, sometimes you’ll find it under just “multivitamins and minerals” depending on which shop you buy them from – they are widely available from a range of different shops. The ones I’m taking at the minute were purchased from Tesco and contain “24 essential nutrients with vitamins B1, B2 & B6 to help support energy levels”. I take 1 in the morning, so as to help me kick-start the day (I need all the help I can get! I was never a morning person to start with, never mind now, with JHS).

So, the last on my list is Kalms. Kalms is a herbal remedy, again in the form of a tablet and aims to relieve irritability, anxiety and the stresses of everyday life. Having explained some of the effects of Hypermobility Syndrome, you can probably understand already why I take these. I take two of these at noon, two in the evening and two before I go to bed to help relax me and help me go to sleep. Kalms contains extracts from 3 different herbs: Hops, Valerian and Gentian. I’ll not go into what they are as I think this post is already long enough – but I’ll leave you with the website so you can go have a look, as it does contain some other helpful information as well.

I know you thought that was the end but there is actually another tablet I now take, as of Wednesday. It is amitriptyline and some of you may have already heard of it. When it was first introduced, it was used as an anti-depressant but that is no longer the case. It is now used as a form of medication to help relax you and therefore help you sleep… It is used in a much lower dosage now than it was when it was an anti-depressant. These are another medication that I receive on prescription, and this are not available for purchase over-the-counter. I take 1 at night, a couple of hours before I plan on going to bed, as advised because it can take a couple of hours to settle into your system. Why am I taking them? Because I struggle to sleep, as many JHS/HMS sufferers will be able to relate with.

Don’t worry, we’re now at the end! I’m sorry for such a long post, but I couldn’t share a snapshot and not explain what each tablet is and why I take them. If you feel some of these may benefit you, then it would be worth speaking to your doctor about them to see if this would be of benefit to you! If you’ve got this far, thanks for reading guys!

Oh, and as promised – the link to the Kalms website!