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.

Is knowledge power? Or does no one know what’s going on?

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Me and my husband have been attending a ‘living with MS’ educational session organised by my MS nurse. It’s spread over 3 weeks and we have done 2 classes so far. It’s interesting to know the science behind MS and it has helped us understand a little more about what happens to your body and how to explain  MS to others.

It was described as your immune system attacking your nerve coatings in your central nervous system,  which is probably the easiest way I’ve found to explain MS to people yet. It was also interesting to see the map of the world with where most cases of MS are, I had no idea Scotland had the most cases of it. Living in the North East of England we are pretty close to them.

What I’d have loved to learn more about was the nutritional side of things, especially vitamins and good foods. It was a shame that this part was skipped over a bit as the person who was coming to speak to us couldn’t make it. I find the Internet full of wacky ideas for MS ‘diets’ which are all looking awful to be honest,  I’d have liked to explored this side a bit further.

Next week is our last session and it’s a question answer one with a visit from one of the MS charities who is bringing some information for us to look at. I was expecting something a bit better from this but I suppose it’s better than nothing.

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I’m still finding myself overwhelmed and although knowledge is power and I understand some aspects of MS a bit more, i’m still struggling to find a place where I fit in or any information that is relevant for me. Maybe it’s just one of those things that takes time to click into place? maybe I’m looking for something to explain everything to me, and maybe that’s what everyone else with MS is doing too.

Still a bit lost but plodding on as normal – waiting for something to click into place.