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.

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.

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…..

Tea & sympathy? I’d rather have chips & Ice cream

One thing I’ve found about telling people I have MS is that they seem to take it far worse than I did…. you would honestly think I had just told them i’m going to die in the next 24 hours. The shock, then the sympathetic looks is usually followed by questions I can’t really answer myself yet!

Now I know people are being kind and sympathetic and maybe reacting to the news in the only way they know how. It can come as a shock to some as I honestly have very few symptoms, but I’m not ordering a wheelchair anytime soon and I can’t really bring myself to say I’m ill as I’m not so this reaction is quite uncomfortable.

I also feel awkward when people say things like ‘you have such a positive attitude’ or ‘your being so brave’ this is actually not the case at all and I really feel like a bit of a fraud. People who are ill are in hospital beds, or on chemo, or in great pain everyday. I’m not. I’m just me with a clumsy hand, this seems very feeble in comparison to people who are really ill and struggle everyday.

I’ve decided to make my MS, just mine again. Family and close friends know about it and they are aware I’ve started my treatment,  but I don’t think there is much else to say about it now, the ‘shock’ is over and the rush to start the treatment had begun.  I don’t want to have to recount everything when ever I see people or give constant updates on my health, so for now I’m letting the novelty wear off and just getting on with my life as normal.

So today I seen one of my favourite people, my auntie. She has had so many health problems, MS, diabetes, blood pressure issues and has battled breast cancer to name a few. She never complains, always laughs and is the last person to sit and dwell on how hard life is! She just gets on with it and is so grateful for what she does have. We had a great laugh and catch up and it was lovely to see someone who knew what I was dealing with and knew I wasn’t there for tea and sympathy.

I have MS – this isn’t who I am – this changes nothing about my personality – i have an amazing family and a very good life – this is something new that I will incorporate into my life and work around it when I need to – because really, what else would I do??

So tonight me and my husband took the kids to the beach for chips (and a sneaky ice cream on the way home) and we enjoyed a walk along the promenade in the tea time sun, it was a beautiful afternoon. I love these times together with the 4 of us as a family, even if my daughter was having a strop on the way back.

This is who I am – a mam, a wife and a chip lover 🙂 

Crazy stuff is happening!

When I was having my infusion today towards the end of the hour some slight (so very small) feeling returned to my fingers, I didn’t think much of it as it was so small, but tonight I have so much more feeling in my fingers and hand in general!  This is the most feeling I’ve had since the symptoms started in 2013! I don’t know if it will last or if it’s the the ‘hit’ off the treatment people experience and it may dissappear but what ever it is it was more than I’d even thought was possible!

Watch this space!!

Tysabri & fire alarms

Today was my 1st treatment of tysabri,  it’s been a long weird day really but not as bad as I was expecting.

I was really nervous this morning, i’m not sure why? I wasn’t worried about the treatment, i just felt a bit nervous, like how you get before a job interview or something. I was half wanting to get it over and done with and half wanting to stay home. I think It was more fear of the unknown than anything else – a bit silly really!

When I got to the hospital I was early and had my book ready? I knew I would be here a while and wanted something to do to take my mind off things. I was walking through the car park and a fire engine came blaring past and pulled up outside one of the other units! I was half way along the corridor when I had to stop due to the fire alarm going off inside the wing i was going to! Typical! – this was not a good sign :/ but It was a false alarm in the end and after a long wait I got inside to check in.

I was sat in the ward waiting for a chair to free up and it was quite a relaxed place. People were reading, playing on phones & tablets or just sitting chatting with each other. Later when it quietened down people even went to sleep! The nurses were lovely too, you could tell they knew the patients and were asking about people’s family’s and jobs, everyone seemed really relaxed and comfortable in the ward.

My appointment was at 11 but it must have been a busy day and I suppose the fire alarms didn’t help either. I didn’t end up getting seen till half 12, it was 1pm by the time the drip was connected. I was starving and tired and already wanted to go home.

The needle bit was fine, they put the cannula in and a flush through first and then after that they hooked me up to the bag with the tysabi in it was set for an hour for the drip to go through, then i had to stay for an hour afterwards to make sure I had no reactions to the treatment. 

The fire alarm went off again while i was in the ward but we didn’t need to evacuate or anything exciting like that, it just woke the sleeping man beside me up and made the 2 women across from me complain about the noise! One of the men said every time the fire alarm goes off as a false alarm the hospital get fined £500! Not sure how true that is but if it is they lost a grand today while I was there!

I was then saved by a man bringing round lunch, yeah, who knew there was food, I’ve never been so grateful in my life. After a beef dip sandwich (I almost inhaled this I was that hungry) and a cup of tea I felt better and was having a great time. I got started on my book, with my feet up, comfortable and relaxed with my drip doing its thing beside me.

I never usually get a chance to read at home with having 2 kids under 5 there is just not the time, and to eat without sharing AND have a hot cup of tea is almost unheard of, it was bliss 🙂

Most people had now left and it was quieter with only a few of us left, it was really relaxing and I can honestly understand how people can sleep during this. More tea was provided along with biscuits and I was having a lovely time reading.

I found the treatment easy and nothing bad at all, I suppose I’m lucky as a lot of the people in the ward had mobility issues and other problems (i’m not sure everyone was there for the same thing as me) I have not seen any side effects either so far so I’m hoping it’s this easy every time. I’m already looking forward to my little bit of peace and quiet next month.

Feeling very blessed today 🙂