My start with Essential Oils

I have always had a small interest in the healing properties of essential oils and have used oils given to me by an aromatherapist or via massages.

However after undergoing treatment which altered my immune system. With two young children this concerned me and I was drawn back to essential oils and their uses. I researched various ways to use the oils and found that diffusing oils could be a great way to protect my weakened immune system.

In all my research I found that diffusing TeaTree oil would dissenfect the air that we were breathing. So any bugs that the kids or visitors brought in would be disenfected in the air to prevent me catching them. Or that’s the theory anyway. I have been diffusing oils for 3 months and so far no infections.

Recipe in the diffuser. (There are different diffusers. Please make sure yours need water, and it may not take as much as 300ml)

300ml of water

3 drops if Tea tree Oil (disinfectant)

2 drops of lavender (I like the smell)

DoTERRA is not intended to diagnose, cure, treat or prevent any disease.

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4 weeks after round 1 Lemtrada

I decided to start this post a few days ago, but honestly I’ve been struggling. (And that’s not because of my keyboard not working properly) While having my treatment I was given IV Steroids. I had been warned that once these were out my system I could struggle. Well it might not surprise most to hear that I have probably over done it as well as the steroids coming out of my system.

Over the past week I have gradually been feeling worse. Mainly with fatigue and pain. On Saturday afternoon I had some gardening to do, it involved cutting branches off a small tree. There were two of us and it took a couple of hours. I felt ok after, it was nice to finally be outside and getting some of the garden done.

Then on Sunday I went on a day drip with family, this meant that I was out the house for 8 hours, and I drove there and back (about an hour each way). That evening is when I realised how bad the pain was getting. I was back again to struggling when my son touched me or wanted a hug.

Instead of resting on Monday I built my sons new bed in the afternoon. I know I should have tried to rest, but with a family this is so difficult. It is now Thursday and I’m not in as much pain now but it is still there.

I’m still off work but I am keen to get back to work, I have started this process and I have also started setting up my back up plan to earn and income while at the same time helping my MS symptoms. More details of this soon…

1 week post Lemtrada R1

Saturday, 1st day home – I woke with a really sore head. Drank a glass of water but it just would not shift. I ended up getting up and drinking more water along with the new meds I have to take along with a couple of paracetamol. I then went back to bed to lie down in the dark. I fell asleep again and woke up feeling much better.

The day passed slowly, I cant believe the boredom that I felt while not being fit enough to actually get up and do much. By around 9/10pm my eyesight was getting worse again and the glasses that I have weren’t helping much.

Sunday – I had an extremely broken sleep, but surprisingly I didn’t notice much when I got up in the morning. I once again had a sore head which I tried to nurse with drinking more water. In the gift box that my brother brought to the hospital he had included the Head Soothe roll on for sore heads. I’m not sure why I hadn’t tried it before. But it worked, it actually soothed my sore head straight away. I would highly recommend it.

I’ve struggled today. I want to do more that I am actually fit to do. My garden needs work done in it so my partner has been out shredding some of the garden waste. I decided to help. I don’t know what I wanted to do as I was scared to touch the garden waste in case anything bit me with my lowered immune system. I decided to pick a few things up off the ground and put it in the bin. Not as easy as it sounds, my balance isn’t so good and the effort of bending up and down was very difficult. I quickly gave up before I fell over. I stood and watched instead.

Before attempting the garden I decided to clean out the car. Again not really fit to do this just now. Thankfully I had help, and I really didn’t do much. I just picked up some rubbish off the floor. I then started picking rubbish that the kids had left out of the boot. Soon I was sitting in the boot, simply knackered hardly able to move and feeling like I had ran a few miles.

You would have thought I would have learned my lesson by now. But then I had an attempt at hanging up the washing. I have never felt the washing basket feeling so heavy. And I felt the same with each piece of clothing that I hung up.

What I have suddenly noticed is that the hunger is back. We had a large portion for dinner and then I was hungry again a few hours later.

Monday – Now on reflection I realised that my eyesight wasn’t effected last night. But then I also couldn’t sleep. I was up past 1.30am lying in bed awake and unable to get to sleep. Not thinking about anything, just not tired.

I took it fairly easy in the morning, just a walk to school with the kids. This was tiring but I think more because I was having a “fight” with my eldest to get him to school. But again I’m hungry. I feel like my youngest and had two breakfasts.

I then needed to go into town with my Mum to return some things. Now that was a very hard walk. I felt shattered and I have walked much further at other times and not felt so tired. I was glad to get back to the car and then home to rest. I’ve tried to keep myself active via short bursts of activity to hep me sleep tonight. But unfortunately the sore head returned just before bed, not as severe as before. But still there.

I have noticed that since I got home I am taking some sort of hot flushes. The heat starts just under my chin and rises to the top of my cheeks. It is more uncomfortable than sore.

Tuesday – I woke feeling okay, almost normal. But I can feel the headache starting, the kids aren’t awake yet. The clocks changing must have confused them. I’ll just lie in bed then until I feel better and everyone wakes up.

The walk to school this morning was tiring and almost frustrating. Often on the way back I run for the lights so I don’t need to wait for them to change again. Well I did this today, just a short run on the way back. For the first time I had to stop at the other side of the road to rest. This doesn’t seem like much, but less than 2 weeks ago (10 days ago to be exact) I ran my best time on the treadmill for a 5km. There have been a few times over the past week that I have wondered I this is all really worth it.

It was parents night, which went well. Felt tired when I got home though as we had a late appointment at 7pm.

Wednesday

I tried to take it easier today as I knew that the next couple of days would be busy. I tidied the house and took it easy.

I decided that I should try and drive a short distance and get back to normality. I drove the shorted distance. To school and back (I can walk this each way with kids in 10 minutes). Everything was great until I got back out the car at the house. I felt awful and so dizzy.

So I called my friend to help take my eldest to taekwando class. Back to resting it seems.

Thursday

Woke this morning a littke sore. When.this happens it often reminds me that I forgot to take my tablets the night before. Not normally a problem. But it means that I have also forgotten to take the anti viral that Ive to take twice a day following treatment.I feel back to normal today. Walked boys to school and then back to school a couple of hours later to see the Easter bonnet parade.

My youngest and I then carried on as normal and went shopping, back for lunch and then back out to a different shop. Had to rest a little inbetween as short dizzy spells came and went.

While out shopping one of the MS nurses phoned me back. She has advised that the vitamins that I was taking before are safe to take, I’d like to retest my levels of b12 and D, she has said that either the GP or the MS clinic can do this. General chat about how I was after the treatment and she reminded me to avoid busy places. This could be interesting over the easter holidays with kids.

Friday

For the past 2 nights ive woken around 3 or 4am like its the morning and im ready to get up. I manage to get back to sleep. But wonder I’d its the steroids. I feel back to normal today apart from the steroid flushes. Even stayed up late. Small victories, but maybe lemtrada isn’t so bad. Just hope it is doing what it is supposed to be doing and resetting my immune system.

I can’t believe that is a week since my treatment finished. I can’t believe that another 1 or 2 people have probably just finished their treatment now as well.
I hope that anyone who reads this who is due to start lemtrada will be reassured that 1 week after finishing treatment things aren’t too bad.

Day 5 lemtrada – Last day

Overnight the ward had bank staff in. They seem to be short staffed most days. But this meant that the nurse didn’t really know about our treatment. Not a big problem, but as my rash was getting worse again I would have preferred getting antihistamines before going to sleep instead of waking through the night needing them.

Eventually she spoke to the doctor and I was given another antihistamine. I struggled to get to sleep so used my eye mask again. I was woken around 3am to get my temperature taken, but to be honest I was relieved as I was happier someone monitoring me. Although I did decide to sit up and show her my rash at this point for some reason. Temperature normal so a few more hours sleep before getting up and ready for the last infusion.

When I woke up though the rash was really bad and spreading, there was also alot of heat coming from it. A cold shower with the window open and I felt a little better. But then it started to heat up again. More antihistamines and I started to return to my normal blotches of skin.

Today has been a hard day it has been like waves of extreme tiredness followed by hot flushes. But once it passes it feels a bit better again. Well until the next time.

I am on a ward of 4 women. 3 of us have been given steroids for 3 days. We were all desperate for lunch on the last day and we heard the food trolley coming. Such excitement for something so simple. Then we heard a tray of food being dropped. I would love to see that scene being replayed again. We were close to going out and scraping it off the floor for them… you should have heard us.

The celebration of being finished.

I want to say back to normality soon. But I’m not sure it will be that quick. The drive home from hospital was odd to say the least. My vision has definitely been effected so I couldn’t see very far in front of us. Good thing I wasn’t driving.

Lots of things have been done to my house over the last year. But when I walked in from the hospital I almost felt disoriented like the house wasn’t mine and I didn’t recognise it. Then the next problem, what was I going to cremate for dinner? Everything had to be very very well cooked to prevent Listeria. But anything that I had that was easy to cook I would normally eat sauce with and the MS nurse in hospital said to only keep sauce open for a week. So some dry over cooked food it was for dinner tonight.

Day 5 water intake 2.7lt

Lemtrada day 4

My brother bought me an eye mask to wear as I normally need pitch black and silence to sleep. It’s not normally something I could sleep in. But I thought I would give it a go. It was ok, not sure of I slept any better or not though. I did sleep longer and woke a little before 4am. I noticed that the temperature was ok and that the ward door had been left open. But around 5.30am I woke again. This time getting too hot, the door had been closed and it was time to open the window.

I didn’t manage to get back to sleep after so got up to brush my teeth. Not sure if the treatments have given be a awful taste in my mouth or bad breath. I actually had to brush my teeth twice as the first time didn’t actually help much. A shirt while after this I started to get a sore head, nothing too bad. But I’m aware of it.

Today there are no steroids so some symptoms such as the rash may develop. Will need to wait and see. I think the nurses must be fed up with us by now. We just continually ask if we can start our treatment yet. And then once its on if its nearly done yet. They will be glad when we are gone!

So once we got started it seemed a lot quicker. Only one toilet break during lemtrada today. We were a bit later than we could have started as the MS nurse came into chat. Mainly about our bloods and the listeria diet that we have to follow.

One side effect that I had heard about but still wasn’t expecting was the hunger from the steroids. Although I thought I made sensible filling choices I was still starving in between meals. To the point that I was watching the clock for meal times and asking why they were running late. When family asked how I was or what they could bring to hospital, my reply. “I’m hungry. Bring food.”

During the infusion it felt like I had a band of sunburn on my right arm. This quickly went away and then swapped to the left arm. After my treatment was finished I chatted to my youngest on the phone and then came back into the ward to start packing my things to go home. Nothing like being keen to leave. I then went to the toilet and found the start of my rash. Some piriton quickly reduced the heat that I was feeling and I was back to normal in no time.

Unfortunately though this didn’t last and I needed more antihistamines before bed.

As you can see my rash is next to nothing.

Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 4 – 2.6lt

Day 3 lemtrada infusion

So last night was the opposite from the first night. I fell asleep ok and then woke at 3am and it was roasting. So we have went from the heating not working to us being too hot.

I spoke to the nurse last night about getting my treatment sharp as the boys were coming to visit and if possible I didn’t want to be hooked up to a drip. I knew then that this was going to be a challenge as she said she was in herself and they would be short staffed.

So I’ve showered, paced the floor and played games waiting for the infusion to start. I got started about 12.30 so looks like I won’t be finished before the boys come up. The agreement was that the boys were coming up after McDonald’s so we managed to pass the time and get the treatment finished before they arrived. I don’t think the steroids were better tasting today. But definitely didn’t seem as strong. Although today I’ve felt a bit more heartburn, apparently this could be the steroids.

Over the past few days I’ve been trying to decide if past symptoms are re-emerging. I’ve sometimes had the weakness in my arms back, I’ve struggled with my eyesight a bit, had a slight difficulty walking. But it could just be ms at the level it already was at.

Excitement at being half way through the weeks treatment. Can’t believe l learnt to read this machine and could probably work it too.

When the boys came and my friend from work I went a walk over into the new part of the hospital. That was probably the worst I’ve felt through this. It was extremely tiring. But at least it might help me sleep.

Tonight we have turned down the thermostat and I’m on window duty if it gets too hot.

Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 3 – 3.3lt

Lemtrada day 2

So before we start on day 2 there is the night before. I suppose as far as hospitals go it was okay. I woke up and could see some light through the curtains. I thought this was great as I never sleep through the night or more than a few hours at once. Checked my phone excitedly to find that it was 1.30am! What a disappointment.

From then every time I moved or I think anyone else moved I woke with the sound of the bed sheets crinckling. Then I’m guessing about 3 in the morning I got my temparature taken again. I was fine so to try and get a few more hours sleep.

Yesterday the room had got really hot and the windows had been open. So knowing typical hospitals I left the windows open a crack. Mistake number one it got cold over night. Won’t be doing that tonight.

Got up in the morning and decided I would attempt a shower. Fun trying to keep one arm dry where my arm has been bandaged for the cannula. But I think I was successful and I then found the ward much warmer to come back into. But now there is a new panic, my temperature had just been taken again. But maybe if I’m feeling hot then I could have a temperature starting? Such a hypochondriac and I’m sure it will amount to nothing.

Other than getting the drugs nothing really eventful happened. I don’t think I’m going to get used to the steroid test though. The treatment started earlier, about 10.30, so that meant I was free to move around from 5.30pm.

My brother visited today. He brought a great gift package up with things I might need. Some of which I had looked at but not bought for some reason.

After the night before with the static bed covers and the cold I got my mum to bring up my fleece blanket. Much more homely and comfy.

Since I had my evening free I even got to have a walk. I didn’t venture far, just to the ground floor and outside for some fresh air and spoke to my youngest on the phone. My eldest was too busy doing homework.

Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 2 – 2.6lt