Two months on

This day, two months ago, I was lying in a hospital bed on a drip listening to my roommate snore away. I was convinced that by morning I would be feeling great and would go home. Wow. I can honestly say that I've come along way since then.

It has been another up and down week, thanks largely to my overzealous activities last weekend. By Monday afternoon I was shattered, and slept all afternoon. This is still a problem I am having while I'm in this "in between" stage (I like that term; not yet better, still a little bit unwell). I know I need to get back to doing normal things, but pacing myself and setting realistic limitations is difficult.

Wednesday was going to be a big day no matter what, as we went to see my neurologist. He is happy with my progress, particularly given how far I've come. I still had a slight nystagmus, and the ataxia is there, but my reflexes had improved. He is still optimistic of a good recovery. He remarked that some of the symptoms may be from withdrawing the medications. So he wants me to stay on the dex until I see him again (in another month) and to reduce the serc. He mentioned that the epilim is known to bring out a pre-existing hand tremor, which is frustrating. I actually worked out tonight that it is more in my thumb than my hand. When I isolate the thumb movement it is quite extreme. I am going to have to look up my hand therapy books and work out what I can do about it as it is a bit limiting (particularly when I'm tired).

Once again my neurologist reiterated that it will be a few more months before the fatigue eases. We also had a rather depressing conversation about some long term consequences/outcomes of this type of tumour which are bothering me, and will probably involve further testing in the very near future. In the meantime, I have my follow up MRI booked for 2 weeks time.

Saturday was the bad day this week. I had had a bad nights sleep this week; Angus has been up a few times during the night, and on Friday night Charlotte had woken crying her eyes out saying that she had had a bad dream, that Mummy went back to the hospital. sigh. She wouldn't settle until she came into our bed, and even then she would drift off to sleep, then startle awake every few minutes and reach out for me. So I'm not sure if it was because I was overtired (I'd also managed another trip to the gym on Friday), but Saturday morning, within the space of 15 minutes, I went from feeling great to increasing fatigue, nausea, vertigo, and vomiting. I was wiped out for the rest of the day although we did manage a trip to the park which was lovely.

This is what I am finding so frustrating. Never knowing if today is going to be a good day or a bad day, or how tired I'm going to be. I know it will get better, and that I need to take one day at a time. So today I am grateful for a good day. It was beautiful weather so we went to Queen's park for a wander around to look at the animals which was lovely. This afternoon I manged to potter around doing some cleaning. Such a change in two months. Here is hoping that the next two months brings more good days.

Having fun at the park

A good week

It has been a busy, and a good week. I can actually say that I have improved significantly this week, Over the last few weeks I haven't actually felt any major change, so to be able to really say "I feel better" is wonderful.

Tuesday morning I had a big change. I've had a strange fuzzy feeling in my forehead for a while now. I actually wondered if it was nerve damage as it was only in a small patch, but it was weird and annoying. Tuesday morning it just...went away. It made me feel so much lighter. Tuesday was also a big day as I met with Kylie, a support worker from the charity Mummy's Wish. As some of you have realised, accepting help is not part of my nature. I have mentioned this charity before - they help Mum's who have cancer. Initially I didn't see how I was part of that group. However, while I was in hospital, James and I contacted them as we realised that we did need help. They have been wonderful, and have organised a cleaner to come fortnightly for a few months. It just takes that pressure off me having to do everything. She stayed for an hour, brought a few treats for myself and the kids, and we talked about what was happening. I felt like a huge weight had been lifted to just talk through it all. She validated how I was feeling, and that I wasn't alone.

Thursday was the one bad day this week. I felt very nauseous in the morning and needed a nap both morning and afternoon. I manged to do the vacuuming but it took a couple of hours (by the time you pick up the toys, and put things away, it is just exhausting). Thankfully it was a daycare day so I also had some peace and quiet.

Friday I was feeling good again. We walked the kids to daycare and I was saying to James on the way home how good I was feeling, and then of course how guilty I was feeling about the kids being in daycare and about the house cleaning. Mind you, as I'm saying this, I'm huffing and puffing and plodding up the street, as I'm still pretty slow. He just looked at me; and reminded me that all these things are helping me get better. So yes, I need to just accept the help.

But I did sit and think about how I'm feeling. And I'm over it. I'm over being sick. From now on I don't want to be sick, so I'm not. I know, I'm not "better". I need to find a word to describe where I'm at. "Recovering" still implies being sick. I guess I'm "rehabilitating". "Impaired" maybe? "Damaged goods"? I know I'm still symptomatic. The hand shaking is bothering me. My cognitive impairments are annoying (particularly when I'm trying to talk to people. I'm sure no-one notices, but it is hard work to hold a conversation). My balance is a bit off (I fell over in the kitchen again this week). I've been getting chronic headaches. And the fatigue is still there. It creeps up on me and bam! I'm shattered. 

But all that aside, I've had a good week. Today I went back to the gym. I did 40 mins of cardio work, which may have been a tiny bit too much even though it was low intensity. But I did it. I even drove there. This was the first time I drove in nearly two months, and I survived that too! Two months ago I was having vertigo attacks, vomiting, and going rapidly downhill. I have come a long way in that time. I am quite proud of myself that I made it to the gym when just 7 weeks ago I couldn't even walk, or see properly.

This week we are going to see the neurologist again for a follow up so I will be bringing up all my symptoms with him. I may need to go back on some medication. I'm also hoping he will order another MRI as I want to know what's happening inside my head. In the meantime, I am trying to go back to living life as normal as possible, and not being sick.

How the kids are coping

It has been nearly two months since I went into hospital, and it is still affecting the kids, particularly Charlotte. Even this morning she made a comment: "I'm glad you came home". I asked "from where?" "From the hospital, I'm glad you came home". That was the sound of my heart breaking.

In the first week or so home it was really hard on both of them. I had no energy, so picking them up was impossible. I slept a lot. Angus spent that week mostly with my Mum. He was very clingy to her, and would go to her first if he wanted a cuddle. Most mornings she would get him up and he would just snuggle into her on the couch for about 20 mins. However, once I started getting more energy back, and being able to do more things, he started to come to me more and now he seems fine. He isn't sleeping well at night but I do think he is teething as well.

Charlotte on the other hand, was the complete opposite. She wanted Mummy to do everything for her. Which was very hard for me physically, however dealing with her behaviour was harder. Because if someone else tried to help, we had a massive tantrum. She often told Mum and James that she didn't like them, and didn't want them. Of course she got reprimanded for this behaviour, but it didn't really stop it. Her clinginess was most noticeable at dinnertime. She had to dictate who sat where around the dinner table. It was easiest to give in on this issue. But even then, she would literally move her chair so that it was touching mine, she wanted to be close to me as much as possible.

I'm still not sure how much of this is normal toddler behaviour, or is because of my hospitalisation. There have been a few instances where she has said things that make me realise it has affected her. When James and I went to the neurologist a few weeks back, she began to chuck a tantrum as she wanted to come too. It took me a while to work out that she was worried I was going to the hospital again and not coming home. Once I reassured her that I would be home by lunchtime, she calmed down. One night she said to me "I'm so glad that you came home from the big doctors (the hospital) and we can be best friends again". That one hurt.

I realised that we had done her a disservice. When I first got diagnosed, we decided not to tell her about the tumour. At that point, she was only 2! We did talk about Mummy being a bit sick, and needing extra rest, but we didn't focus on it. I never honestly thought that over 6 months on it would still be such a big part of our life. And now she is nearly 3 and a half, heading to four! She is aware of so much more and I think is old enough to comprehend everything. Of course she knew that Mummy was sick and had to go to the hospital, but I'm not sure she knew exactly why. So the other day I sat her down and had a talk about being sick, and why. I told her that I had something growing in my head, and that the doctors gave me some medicine which made me very tired. She asked if she could see the tumour (which was very cute the way she did it).

Overall the talk went quite well. I know it may take time for her to relax about what has happened. Every time we talk about doctors I think she feels I'm going to go away again so we need to continually reassure her. However I know I've done the right thing by talking with her about blobby as my need to go to doctors isn't going to go away any time soon. In the meantime I am doing my best to spend quality time with her. I think this weekend I may take her out for coffee for a mother/daughter treat.

On our own

Mum left today. After being here for 5 weeks. Wow. We miss her already, although I am sure she is sitting at home in the peace and quiet right now and going "aaaaahhh". She has been incredible. There is nothing she hasn't done in the past few weeks. From changing wet beds in the middle of the night to doing cleaning, changing nappies, wiping snotty noses, making lunches, feeding children, chasing, playing; basically being there. Not least was the emotional support she has given James and I, and for that we will be forever grateful.

One thing Mum has done is break a few of my bad parenting habits.  Yes, shocking I know, but I had some bad parenting habits. Like letting Charlotte eat toast on the couch. But we don't do that now which is great. And we seem to have formed a bit of a better morning routine than what we had before I got sick which always makes life easier.

I feel this last week I've been a bit stagnant in my recovery. Still good days and bad days. I dropped down the dex dose on Wednesday, and Thursday was a terrible day. I woke up with bad vertigo, and terrible fatigue. It didn't help that Angus was up  for 2 hours in the middle of the night, so I didn't have much sleep. However James and I had booked Gold Class movie tickets for that night (hey, we only had a few nights left with a free babysitter!) so I was determined to go out. We had been given quite a few vouchers for Christmas from various family members and all combined it meant we could have a very indulgent night with movies and food and wine. That counts as my dinner out (I've been craving a restaurant meal, well it wasn't quite that but it was still dinner out).

I am still getting some odd symptoms. The hand tremor is actually getting worse. It is very noticeable on some days, such that I have difficulties holding things. On a bad day, my memory is absolutely terrible. I get this strange fuzzy sensation in my forehead and I can't think straight. I've also been getting quite a few headaches. I've also noticed on bad days that my balance is worse than say a few weeks ago. I'm seeing the neurologist next week so will obviously bring all of this up with him. I am very tempted to increase my  medications again but don't want to do that. One great thing about dropping the dex is that for the first time in weeks I have had a good, solid 7 hours of sleep!! It only happened the once (thanks to two children for sleeping through) but, I am actually sleeping again.

Now that Mum has gone James and I need to work on getting back to normality and our routine. I'm still very fatigued, and by about 11am I am hanging out for a sleep. I've been having a nap while Angus naps and we are going to keep doing that. This is one of the perks of James working from home, he can keep an eye on Charlotte while I have a lie down. It is only for 3 days as the kids are in daycare the other two. I also find by late afternoon that I've had enough for the day, so sitting on the couch and watching playschool is about all I can manage.

However today hasn't been as bad a day as I feared. Charlotte played playdough for well over an hour this morning, and surprisingly Angus didn't want to eat it. We then had a play outside while I hung some washing. Afterr our nap we managed a trip to the shops, and had an early tea. I think I need to go and have an early night now, but here's hoping to more days like today.