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:

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.

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 🙂 

Bloods, bloods & more bloods

So on Monday after my diagnosis things just kind of sped up. The MRI showed a lot of activity since the previous scan and treatment was to be started as soon as possible to try and stop any further damage being done.

My MS nurse is great, I love the way she is completely straight with me, very ‘this is what it is and this is how we can deal with it’  her honesty doesn’t scare me about what I have – it’s practical, I prefer that.

We have decided to treat using Tysabri – This is given by a drip once every 4 weeks, it’s going to help stop the movement of the white blood cells across the blood – brain barrier into the central nervous system which should help prevent nerve tissue damage. The benefits can be reduced progression of the disabling effects of ms by over 60% and decrease the number of ms attacks by over 80%. This was more than I was expecting from any treatment and the % is much more than I could have hoped for.

Crazily i’m booked in to start treatment on Friday!  Diagnosed Monday and treated by Friday,  this is moving fast, but the longer we wait the more damage is being done and a relapse could cause huge irreversible damage, so as I was told by the ms nurse when I questioned how quick it was starting ‘why would we wait?, your young and active, let’s keep it that way!’

I went up to visit the ward where I’d have the treatment, it was nice and not what I was expecting at all. It was all big comfy chairs, TV to watch, people reading books or magazines and just chatting with each other.  I suppose I thought it would be people lying in a bed looking ill, i’m actually looking forward to a couple of hours each month to sit and relax just me 🙂 no kids or house work to do – i may even get to read a book!

I was all set for Friday but my MS nurse rang yesterday to say my blood test showed my liver function test was quite high, I had to go back and have my bloods repeated this morning but thankfully my treatment can still go ahead as when it was discussed they had decided my need for the treatment was greater. I just need my bloods done again in 2 weeks and ill get an ultrasound on my liver soon too.

I wish they would stop testing me for things as they seem to find more and more things wrong with me – that and the fact my arms look like a junkies now 😦

All about me :)

Ok this is the start of my journey! so as they say, let’s start from the very beginning…..

I’m 28 and was diagnosed with MS on Monday 4th August 2014. I was expecting the news as it had been mentioned at earlier appointments. I was strangly quite relieved to have it finally set in stone, it had finally ended the ‘what if’ stage and started the ‘where do I go from here now’ stage, which I think is a better place to be.

It first started in 2013, It was during my second pregnancy, i was nearly 5 months pregnant and I started getting pins and needles in my fingers on my right hand, it then spend to my hand and up my right arm. Then I started dropping things, cups and plates would just literally tip out of my hand! My coordination went next, I’d go to put the phone down at work and I’d miss? I’d place something down and it would slam really hard. I’d never had anything like this happen before, I thought it was just a trapped nerve or something like that.

I wasn’t really worried until I lost the use of my whole right arm. It was just floppy and had no sensation, I couldn’t grip anything or even move it. If I was touching something I couldn’t feel the material, couldn’t tell if it was warm or cold, I couldn’t tell if slamming my hand down hurt! Nothing was causing me pain and I remember at the time being more worried as we were going on a family holiday in a few weeks and I was supposed to be the driver.

In April 2013 I rang my GP who told me to come straight down, I was then to see a neurologist the same day as an emergency, I think this urgency was due to the pregnancy more than a concern for me as I was fine otherwise. There was lots of tests done at the hospital but all showed I was ok, but as I was pregnant I couldn’t have an MRI scan, I was assured that nothing was harming me or the baby and was possibly a trapped nerve somewhere in my neck.

We went on holiday, my arm was still useless and I couldn’t drive so we ended up taking 3 trains and 2 taxis! my poor husband had to carry the bags, then later my 3year old daughter when she got tired. This was not the best idea we had, but we still managed to have a lovely holiday.

Fast forward about 5 weeks and the feeling came back to all except my fingertips, I was at work, doing school runs and I was just grateful that my arm worked again. I wasn’t bothered really about my finger tips, as i assumed the feeling would come back eventually . Life was busy.

I then had my little boy who was absolutely perfect! He was poorly when he was born and spent some time in neonatal. It was a emotional and crazy time for us, but he came home after onlyba short stay. I felt so happy, I had my little family complete. I’d stop noticing that the feeling had not returned to my fingers, I used to joke about how I can now pick hot stuff straight from the oven! Life was moving and we were enjoying being a family of four now, we were to go on our next family holiday with both kids in April 2014.

The pins and needles started getting worse in my hand and arm, Id ignored it as I was too busy, I also started getting excruciating pain in my wrist and shoulder, almost like I’d been slammed into a wall, or thrown from a car. Again I wrote it off, I must have slept funny or pulled something, maybe it’s from carrying the baby around in the car seat. I always had a reason.

Then I dropped a cup of tea – just like last time my hand juat tipped on its own. It was back.

This time the Dr didn’t seem overly concerned and I had to practically beg for the MRI that couldn’t be done when I was pregnant. Surely they would find the nerve, untrap it in some way and all will be sorted.

I was booked for an MRI scan on my neck, I went to the local hospital and lay in the tube. No one can just relax with that noise surely? The day after the scan the hospital rang me and said I needed to come back down for a scan on my head the next day. I guess you know it’s something when things move fast. The next day the Dr rang to say he was going to send me to see a neurologist – MS was mentioned for the first time.

I was quite shocked but almost glad they had found something in a way. I was however really confused as it didn’t really fit. The idea I had of people with MS is they use a stick or wheelchair and are tired all the time? I suppose I was waiting to be told it was something else, maybe something similar but not MS. It did start to sink in a bit more as you have time to digest the information while you wait for your next appointment. So I was prepared when I seen the neurologist again, she wasn’t looking for anything else it seemed this was MS, we just needed to prove it. I’d had 2 attacks but at they were both on my right hand she couldn’t diagnose as there needs to be 2 separate attacks. Still not a definite yes or no, this drove me crazy! Another MRI scan was booked this time using the dye to see the damage and lesions. So off I went for more scans, this time they scanned me as normal, then while I was still lying down in exactly the same position they injected some dye in to my arm.

This brings me back to now…. on Friday I was contacted by Barbara who is my MS nurse,  i was told when i seen the neorolgist I may need to see her. I’d still not hear back about my scans yet? So is this a yes or no? she confirmed the scans were what we thought and said I should have had a letter from the neurologist confirming my diagnosis, ERM no? OK she wanted to see me Monday to discuss treatment.

So here I am…. I thought this would be a good way to document my journey,  I honestly don’t know enough about everything at the moment and im not 100% sure how I feel about it all, but it’s happening so I’m just going with it for now!