Infection & Infusion

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I will honestly say that it’s now October,  i’m on my 3rd month of treatment and I still don’t fully understand how everything works.

2 days before treatment day and I wake up through the night with symptoms of a water infection. Now I know one of the side effects of my treatment is water infections, I had mentioned I’d suffered with these for years when I was speaking to my MS nurse and the Dr has never really done much about them. I am in the process of being referred to urology by my nurse to see if we can work out why I get them anyway I was worried I wouldn’t be able to have my treatment with an infection so I rang my nurse and asked if I can drop a sample in to be checked.

Treatment day, the symptoms have died down and I’ve not heard anything back about my sample. So I’m all hooked up ready to go. Going through the check list with the nurse and I mention my possible infection,  things are checked and I DO have a water infection? another sample given and calls to the MS nurse, then it’s decided I can still have my treatment I just need some antibiotics. Not sure if I should be concerned,  but I was just glad I could still have my treatment

How bad is infection with tysabri?  what will it do? anything?  mot much? how concerned should I be about infections? I told you I still don’t quite understand!

I did have a great time on the ward tho, there was some right characters in with me and it was a great laugh! It’s always a good atmosphere and I feel really comfortable there, the nurses are starting to remember me and it’s not daunting at all, my chair even reclined this time so I had little to complain about. I’m nearly finished my book too so going to have to start looking for another good one to read soon.

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I am determined to not be ill this winter, I have been taking my vitamins and had my flu jab, but with two small children who will pick up everything going I need to keep myself going. I just don’t have the time to be ill. I also don’t want to take time off work, I don’t want to have to explain myself and im worried it will make me look ‘sick’ and I’ll become unreliable or people with think I’m playing on it, it’s easier for people to say how well your coping.

The weather has really changed today and it really feels like autumn now. The kids have there dressing gown and slippers on and the cosy bedding has came out too. Not bad for making it to October.  I’m just hoping for a mild winter with as few bugs as possible for us all. There is nothing worse than having a poorly household.  It just bounces from one to the other and it’s exhausting!  I remember the vomiting bug from last year that had my washer running constantly with nowhere to dry everything.

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I do actually really like autumn & winter, I prefer cosy dark nights to long sunny days. It’s homely 🙂 Soup, pjs, cosy blankets & mugs of tea – bliss.

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2nd treatment & 2nd wedding anniversary

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I’ll be honest it’s not as nice as last month. The needle and infusion are totally fine but my chair is broken and uncomfortable,  it is stuck upright and doesn’t recline (1st world problems) and im sat in a draft too! I’m sure I’ll get over it though 🙂

Ok whine over then – the staff are lovely, it’s a great atmosphere and nothing is too much trouble. I’m on my second cup of tea and lunch will be hear shortly. I can’t really complain!

I was prepared this time with my book, snacks and drinks all ready to keep me going. I even had time to go shopping for new work shoes before my appointment without children, This is classed as a luxury indeed.  This has turned into a lovely me day when I have my treatment, turn a negative into a positive I say 🙂

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Really looking forward to tonight too as me and my husband are going to see Ant & Dec on the takeaway tour in Newcastle, it’s our second wedding anniversary next week so having a night out together tonight – can’t wait 🙂 It’s lovely to get some time just the two of us and go out together. My mam is going to babysit for us so kids will be all sorted.

Ok i’m going to read my book and wait for lunch, all good! Apart from a numb bum

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JCV Negative, that’s positive!

Today I had another visit with Barbara to check in and get my bloods done again.

My liver function test (LFT) was quite high when I had my 1st lot of bloods done, and this was before my treatment had started. So we are keeping an eye on this, my neurologist and MS nurse had consulted with a specialist about my liver before they started me on Tysabri. I don’t really drink alcohol and don’t take a lot of medication or any drugs, so it is unusual for it to be high.

They decided the need for me to start treatment for my MS was greater but we still keep a check on it and I’ll have appointment for a liver scan soon.

My results from my last lot of blood tests had came back and I was showing as JCV negative, which is quite a relief as this greatly decreases the chances of me getting progressive multifocal leukoencephalopathy (PML)

John Cunningham virus (JCV) is a common virus that’s completely unrelated to MS, about half the UK population are infected with JCV and most people are infected in childhood. 

JCV is important when taking Tysabri as the virus can become active again in people who have a weakened immune system and can end up causing an unusual brain infection (PML) which can lead to severe disability or death.

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Although I have been tested and my results have came back negative, I will be tested again to re check incase anything changes in the future, but for now it’s good to know 🙂

While talking she seemed very interested when I mentioned I have always had reoccurring water infections,  I’ve never been given a reason or had any investigation done as to why this happens. She mentioned seeing urology to get it checked anyway. I feel really looked after by Barbara,  she is really straight to the point and will be very thorough when it comes to your concerns.

I also spoke to her about the pain I was getting in my arm, she is going to speak with me when I have my treatment and maybe change my painkillers, I had told her I didn’t want anything that will knock me out or make me feel out of it, but also the stuff I have only takes the edge off slightly. 

She also mentioned taking a vitamin (D3 & calcium) which I say I’m going to do and never get round to buying them for the family. She then told me about a information group she was holding soon that I’d be invited to attend with my husband.

A busy morning followed by lazing on the sofa all afternoon having a phone day with my daughter while the littlist is with my mam for a few hours.

From lightning speed to snail pace

A lot has happened in a short space of time for me, from diagnosis one day to starting treatment straight away! Everything seemed to go at 100 miles an hour, there was so much information to take in, then at home or with friends everyone wanted to know all about it. Then there was the treatment itself to get my head round, and even now I still don’t fully understand what MS means to me, and how it  is going to effect me for the rest of my life.

Things now are slowing down a bit and the novelty has seemed to worn off, everything that needs to be discussed has been, and im left with nothing else to say about it and I’m not sure where I go from here.

I’m starting to digest bits at a time but it’s still so huge!
Things sometimes pop into my head and it’s like a sudden realisation which throws me for a bit. Like ordering a repeat prescription for painkillers.  I hardly ever used to take tablets, only if I was in agony.  But  now I take a lot, and will do for the rest of my life. The rest of your life is a long time when you think about it. Or when I drop things, the realisation that this is permanent and will get worse.  It seems so final.

It got me thinking about something I read:

The 5 stages of accepting an illness are:
Denial
Anger
fear
Depression
Acceptance

I don’t know if I believe this as I’m not sure I’m in any of these.  Now at first we did the whole denial bit and sometimes I go back to that. When MS was mentioned I had hardly any symptoms and i seemed like the most unlikely person to have it. I was fit and healthy,  I went running  and felt good. So the denial was understandable I thought.  Now the denial seems to be more like,  “i’m not ill” and “i’m not disabled” I think this because I don’t feel like it. I have never got angry about it either, I’ve not had the “why me” thoughts, I did get upset when it first hit, I was worried about the life me and my husband would have together.  I felt so guilty I was putting him through this, he didn’t sign up for this life, I thought about when our kids were older and we get some time together,  what if he misses out on that because he is caring for me? He did point out that I’m so spoilt anyway he is almost my carer!  Now if they had ‘confused’ or ‘overwhelmed’ as a stage I could relate to that a bit better right now.

I am hoping that given time, things will just slot themselves into place, and I will be able to just adapt my life around my MS. Until then ill just need to take it one day at a time.

Exhausted, but home!

I’m finally home after 6 1/2 hours! Exhausted is not the word 😦

A&E took my bloods & ran an ECG aswell as giving me a full check over. They have concluded it’s more than likely a side effect from the tysabi and to keep an eye out for any further symptoms or changes.

What I don’t understand is, why didn’t the day ward where I had my treatment on Friday see me and do this? Instead I was left with doctors who had never came across this treatment before. 

My MS nurse is on holiday,  i’m a newly diagnosed patient who has only just had the 1st treatment days ago. The only point of contact I had was the ward who gave me there number telling me if I feel unwell at all I MUST ring them. I did that and was told to go to walk in or a GP who have then sent me to A&E to be checked! I just expected a bit more aftercare,  if it was normal for me to feel this way, or of the side effects were to be expected surely they could have said that when I rang them.

I will mention this to Barbara when she is back from holiday as I need a point of contact for cases like this. I was following the instructions of the nurses on the ward for what I need to do if I felt unwell. I just felt like I was bothering people and then dumping it on my local A&E.

Gutted I missed putting the kids to bed too, but little man has just woke up so stole some cuddles there 🙂

But anyway all seems well, i’m going to bed now for some much needed sleep ZZZZzzzzzz

Oh almost forgot! The fire alarm went of when I was in A&E! How weird is that?  anyone would think it was me at this rate!

Nursery visits & A&E

Well today started out like any other, the usual madness in my house of getting the kids and me all ready to go out. My daughter was having a day with my parents while i took the littlist for his nursery visit to meet the staff before he starts his settling in visits.

The visit went really well, he was really shy & clingy for a bit but started playing with the others towards the end. When the snacks came out I thought I could have left him then and there! He was straight at the table for a bit banana.

I don’t think he will find it too hard to settle in come September. I’m still not looking forward to it but I feel a bit better now he has been. I have been home with him for a whole year so not sure how he was going to cope. My little girl started nursery at 8 months and it was hard at first but she did love it once she was in.

I also had to pop into work as they need a copy of my passport for there files, so after going home and a frantic search for it (why is it not in the import documents files with all the other stuff?) I was off out again,  baby and
bags in tow – all rushing today.

I arrive at work and feeling a bit funny, like dizzy, sick and a bit floaty. Decided it was probably the heat in the car, the rushing round and the fact I skipped breakfast this morning in the chaos.

Then after I left work I was really shaking, felt really dizzy and sick and like I would pass out. My friend lives juat around the corner so I went to her house as I had little man with me and I was driving. I thought ill have a cuppa and sit till it passes. I still wasn’t concerned just thought I’d done too much today.

I was there a couple of hours but I still felt unwell. I rang my mam and went home. She came and helped me with the kids and I thought I’d ring the hospital and see if this was common after treatment as they had told me to call if I felt unwell at anytime.

After speaking to the ward they asked if I’d spoken to my MS nurse, erm, she is on holiday and I’m a bit new at this, i’m not sure who i should call? They rang back after checking with a Dr and advised me to see my GP or local walk in centre. Off I went to walk in as getting a GP appointment for less than 2 weeks time is hard enough. My mam was driving and the kids both loaded into the car.

I waited at the walk in centre while my mam took the kids to her house as it was tea time and they were getting hungry. I was then told that walk in can’t deal with me and I need to go to A&E. Great. Here I was with no car or money on me needing to go to A&E (back in the town we have just came from!) and I don’t feel particularly well. I just wanted to go home, I’ve wasted enough time and feel if it was that important surely I would have been seen by my hospital when I rang? This is probably just a bug or a normal side effect and I’ve spent the whole afternoon feeling lousy going from one town to the next and wasting my time!

So here I am sat in A&E waiting to see someone to probably be told i’m fine. I just want to go to bed 😦 My mam is dropping the kids back off home as my husband will be in from work now, so at least they are sorted. It’s not really fair to lump this on him when he has just got home tho.

It’s never just a normal day…..

I’m not naive enough to think this is a miracle…..

…. But I am positive enough to believe it’s a chance.

I’m struggling with the doom & gloom of the Internet. I suppose everyone is doing what I am – having there very own honest say, I just didn’t expect it to be so negative and hard to read about. I feel I don’t belong in this ‘group’ I don’t feel ill, i don’t have all these awful hardship others have. That’s not me, I have got MS and am going through DMT. I’m in no way in denial about that, just maybe a bit lost as to where I fit in.

Im a very positive person the moment and in quite a good place, I know many things may change but I will deal with that as, and when it happens. I can’t bring myself to sit and think about the ‘what if’s’ it’s such a waste of time and quite a boring subject to me. If I stop and do that I may miss out on the other important things going on in life!

I’m struggling to find a place to be content, somewhere I can have a balance.  I don’t want to keep talking to people around me about this as they don’t understand, and i find it hard work explaing everything all the time. The ‘support’ places and stuff I’ve found are not for me right now. I feel I don’t fit in as I’m not part of that clique either.

Maybe I am in denial, maybe it will take things to get worse before I realise this is serious, but for now my life hasn’t changed since last week and quite frankly I have too much other stuff to do.

I have 2 kids birthdays to organise, my baby boy is 1 this week and my daughter is coming up 5, so naturally she wants a disco like all her friends have! With a frozen cake and a princess! Then there is back to school stuff to do, my big girl is starting reception in September and I need to settle my lil boy into his nursery place before I go back to work from maternity leave in a few weeks time.

After I have sorted all that out I want to do something special for our wedding anniversary (about as special as you can get with 2 kids under 5!) It’s our second anniversary and to be honest the 1st was a disaster,  I had just had my little boy and he was in special care after he was born. We hadn’t long had him home and my husband had went back to work, so no 1st anniversary for us or birthday party for my daughter last year This year I want both to be special, but just like always life is crazy busy and costs a fortune. I have nothing to whine about and no time to do it if I wanted to. My family keeps me busy for now and I’m lucky to have that.

I’m also glad for the treatment, it sounds positive and hopefully can keep me fit and mobile for as long as possible. I’m not stupid tho, I know you can’t cure MS but why is it so strange to be grateful for the chance that DMT can give you? After all shouldn’t you always take a chance if you get one? And if it doesn’t help then I tried and ill try something else. I have options, which is more than some people have.