Let’s try again

So Friday is my allocated Medication day. I have to take it the same day every week and I thought Friday was good for many reasons, but mainly just because I don’t have to work the next day.

After a horrible time last week I took some extra precautions to make sure I got some good sleep and didn’t feel the side effects so much. I took 2 paracetamol 1 hour before I did my injection and 1 sleeping tablet 20 minutes before. I was all showered and ready to go to bed as soon as I injected, at around 10pm.

I went to sleep absolutely fine but woke up at around 2.30am with the shivers and a headache but I took some more paracetamol and managed to get back to sleep quickly afterwards. I woke up around 9.30am and all I felt was achy bones. I’ve taken some more paracetamol and am just having a lazy morning in bed but I do feel much better than last week so yay!

Thanks everyone for all your advice on making it less horrible, it clearly worked!

A x

(For those of you who are interested, this is what the injection pen for my Avonex treatment looks like!)

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Sleeping pills and MS… yay or nay?

So as I’ve spoken about before, I’m having real difficulty sleeping lately. Everything I’ve tried to do to make sure I get a good nights sleep has ended up with me staring up at the ceiling until gone 3 in the morning.

I’ve tried:

  • No phone at all until after 5pm
  • Only go into my bedroom when it’s exactly time to go to sleep
  • Getting up and doing something boring when I’ve realised I can’t fall asleep
  • Cutting caffeine out completely
  • Trying to go to bed later
  • Exercising
  • Drinking warm milk
  • Lush ‘sleepy’ moisturiser

The last thing I want to try is mild sleeping tablets (that are herbal rather than medicated) that I can just buy in a pharmacy. But I’ve done a little research and have read only bad things about them. Apparently although it makes you sleep better, your day time fatigue levels increase and it becomes a vicious circle. Has anyone tried any and can give me any advice?

Thanks, A x

How do I turn off the water works?!?

Today has been a disaster from the minute I went to sleep (6am…). The Avonex side effects hit me hard at around 10.30pm last night (I took my first injection at 5pm so around 5 hours later- NTS). It started with just feeling really tired; nothing new there; my body, especially my neck, ached like mad and I had an average headache. All easy to deal with, no drama.

Then came the sweating, the shivering, the pounding headache, the all over intense itching and aches. I took strong painkillers and hoped I would just be able to quickly fall asleep and wake up in the morning feeling fine but every time I nearly drifted off another ailment came up and made me feel a little bit worse.

This went on all night long without even an hour of respite. I finally went to sleep at around 6am when things started calming down a bit. I woke up again at 8am and then went back to sleep till around 12.30pm.

I got out of bed and up because I was meant to be going away with my family for the night. So I got up, packed my bags and went down for some lunch. My mum came in and asked me how I was feeling and I just cried. And cried. And cried (two hours later and I’m still going).

I’m just exhausted and I know I’ll feel better after a good nights sleep. I know that next week I’ll do my injection later in the evening so that I can go to sleep before the side effects make an appearance. I know that after a couple of months my body will get used to the medication so won’t react so badly.

I just feel hard done by. Why is it you have to make yourself poorly to make yourself better? Silly drug. Anyway I’ve waved off the family and have gone back to bed for a nap. Hopefully when I wake up I will have given my self a doss of man up and my tears will be dry.

A x

I’m officially on my MS management journey (…hooray?)

Hi all, I’ve had a very busy couple of weeks recently but this one especially for many reasons:

  • I had a hospital appointment about my other health problem
  • I had my PIP assessment
  • A months worth of medication and a sharps box (and all the other glamorous bits and pieces) were delivered
  • I had an appointment with my MS Nurse
  • I started my Avonex treatment

I feel better already for not having to wait for anything to come through or be scheduled until April now! But having it all mushed in to one week was a little extreme.

So my PIP assessment was horrible. I was really made to feel like I wasn’t worthy of making a claim, that I wasn’t disabled enough. She made comments like ‘what disability?? Even I can’t squat that low!’ And ‘so have you considered cutting down your work hours??’ (Of course that’s why I am here- I just cannot afford to loose a days pay). So I have little hope of a successful claim now- but we shall see.

My MS Nurse appointment was beyond lovely, aren’t they the nicest people on earth? I have two that normally see me together, both called Louise and they both give me so much time and respect. I always leave so much happier than when I go in which is a definite first for me and medical people!

We did my first injection together of Avonex; an injection I will take once a week that will hopefully slow relapses down by 1/3; and whilst I’ve spent all week being so nervous I really needn’t have been.

I wouldn’t go so far as saying it’s painless, but it is a pain that’s very doable and one I’m sure will just feel like nothing after a few months. The scariest part for me was doing it myself, inflicting pain on myself voluntarily but again I’m sure that’s something I will get used to over time.

Side effects were another big worry of mine, and whilst it hasn’t even been 12 hours since my injection yet so many the worst is yet to come, it’s something I massively over hyped. I didn’t drive to my appointment because I was worried I would be too poorly to drive home immediately after but for the first few hours I felt nothing except a little tenderness and a cold sensation in my injection area so I’d definitely over planned for nothing.

I am feeling a little out of sorts now with a bad headache and my body feels rather stiff but it’s something I can definitely cope with. Side effects are supposed to wear off anything after 12-24 hours so hopefully a long sleep and I’ll wake up fresh as a daisy!

It all feels more real now: I am taking medication for Multiple Sclerosis. Suppose I ought to stop thinking that they must’ve just misdiagnosed me ey?

A x

I’ve been sitting waiting wishing

Isn’t waiting the worst?! I’m an extremely impatient person so I have been really stressing about about the list of things I’m waiting for:

  • Waiting to hear back from DVLA about my license
  • Waiting to hear back from PIP
  • Waiting for a call from Medicare about my prescription being delivered
  • Waiting to hear when my next MRI scan is going to be

Every day I rush to check the post, panic whenever my phone rings. I need to relaxxx and learn to be a bit more patient, but I also want all the information now.

A x

Post Christmas slump

I hope you all had a wonderful Christmas! I sure did, but I am definitely paying for it.

Christmas is my absolute favourite time of the year, simply because it’s the only time where all my favourite people are under the same roof for a long period of time (yay for adult sleepovers!). All 14 of us cram into my Mums house with makeshift beds scattered here there and everywhere. We stay up till late having fun and wake up early to start over again the next day.

Whilst this was wonderful and I wouldn’t change it for the world, there was no room for me to simply just go and take a break which I so desperately needed. Following on from my last post, I still am not sleeping very well at all. I’m lucky if I get more than 5 hours sleep a night at the minute. Even less so over the past few nights where I’ve been sharing a bed with my sister (something I hate doing- with anyone not just my sister!).

As the week has gone on I’ve got more and more ill, my bones ache more and more and the headache has reached extreme levels. So, last night I crashed. I worked for a few hours in the morning and by the time I got home I had tears from just standing up. I ran myself a bath and laid in there for hours fast asleep (dangerous I know!) I got out, covered myself with Deep Heat and got my PJs on all before 4pm.

My family (who were all still staying over) had been out shopping all day and when they got back I didn’t go and say hello simply because I just wanted to go to sleep. But my stepdad came upstairs and was actually quite rude and said “why are you in a grump? It’s not our fault you had to work and couldn’t come?” And it honestly made me so upset I couldn’t stop crying for the rest of the evening.

I tried my hardest to make sure my family had the best Christmas, that I didn’t moan about how tired I was or anything even once. I didn’t retire to bed early or be a party pooper or say no to the Jäger bombs that were going around, but the one evening I just needed a little bit of me time I get ridiculed and embarrassed.

I suppose that’s the worst part about an invisible illness.

A x

Sleepless nights and grumpy days

This past week I have not felt festive at all. I broke up from work for Christmas on Wednesday and since then I have barely slept for more than 4 hours a night.

I am exhausted every night when I go to bed, I try and leave it as late as I can, I don’t go on my phone or watch anything but still sleep never comes.

Last night I thought it might be because I was getting too hot so I opened my windows up and put on my summer pjs but within half an hour I was shivering so much I felt sick so that plan failed too.

I know you can’t put every single thing wrong with you down to MS, I know that is an unhealthy way to live, but my relationship with sleep is something I’ve struggled with for a while now. And it does have a big impact on how I spend my time.

Some nights I can go to bed at 9pm and not wake up once until 12pm the next day (I try not to let myself do this too much), other days I can go to bed at 11pm and wake up at 1am feeling refreshed and rejuvenated like I’ve had a long 12 hour sleep. Other days, like today, I get four hours sleep and I spend the day walking around like an irritable zombie.

A bit of balance will be nice please, body.

A x