There are a combination of factors I think that are making me feel unwell. My chest is obviously not great, and I'm not clearing well during physio still, however I don't think I have a raging infection and Luke agrees as I tend to smell different when I do. I think my weight is playing a major factor, I don't know how little I actually weigh at the moment, which is naughty of me as I've been supposed to be making an effort to put on weight, but I'm struggling. The stupid thing is if I do my feed the weight would go on without any problems, but I just keep not doing it, there are reasons for this.
The first and most obvious is just sheer laziness and not being bothered with all the faff of setting it up each night and taking it down each morning, however that plays a relatively small part as I know full well I can ask Luke to get it for me.
The second reason is exhaustion, I'm so tired and desperate to get a good nights sleep I am reluctant to hook up my pump as it frequently alarms in the night, I also worry constantly about it leaking, and will often wake with a start when I lie on the cold tube thinking it has disconnected.
Thirdly I worry about getting tummy ache and feeling bloated, it is a lot of milk and a big strain on my digestion which is really not working well at all at the moment. It's hard to motivate myself to do something I know is going to give me tummy ache.
Finally since my pregnancy I have had some very bizzare issues relating to body confidence. It is VERY unlike me and I can't really understand why I've suddenly started having problems with this aspect of self-confidence, I assume it must be some strange consequence of the hormones and perhaps a subconscious adjustment to my new identity as a mother. I know I'm not fat, I know I can easily be about 55kg before I get fat (I suspect at the moment I'm more like 45/48jg) however any weight I put on instantly makes me feel really fat. I think mentally I could overcome this if it wasn't for the fact that the feed makes my tummy bloated a lot of the time, and so I get a really fat lower belly, which looks even worse at the moment as I'm so thin. I know it's silly and shallow but it's how I feel and I'm struggling to overcome it constructively.
I think the knowledge that if I did do my feed the weight would pile on without problems (aside from the ones mentioned here) is almost a downside as it makes me complacent which I shouldn't be as a high weight is a good safety cushion to have.
Today has just been ridiculous, the only reason I managed to do what I did (namely tidy the bedroom and make the bed) is because I bought this lovely new bedding for Luke and I ages ago but we have been waiting for us both to be here, and for us to have the house to ourselves before we put it on. I wanted to get it done as I wanted it to be a nice romantic surprise for him when he got home.
However I wanted to do so much more, there were some lovely ideas I had about getting some chocolate buttons for us to eat together. I also had some other things I REALLY needed to do today such as put in my prescription, getting Edward measured as I said earlier, as well as taking him swimming, It was so frustrating to know I just couldn't do it.
I started to get quiet upset as I was just so exhausted, I just did a few tiny bits and then had to lay on the bed with Edward for about half an hour despite having had a lie-in this morning (after sorting Edward first thing). This has been going on all of the last week or so, I have frequently been having to nap in the day, and even on days I haven't actually had a nap I've seriously thought about it or had to have a bit of a lay down and a rest, this is despite having done hardly anything really...today the cumulation of it all caught up with me.
It makes me worry about what kind of mother I'm going to be to Edward and what kind of girl-friend I am to Luke as I'm not that nice when I'm tired, I get grumpy and impatient. I know I haven't been very good with Edward the last few days when really he needed me to be understanding. I am also really stressing about uni, I just keep thinking if I'm this tired when I'm doing nothing, how am I going to cope with two mornings a week at uni.
I then think that part of the reason I've become so weak and pathetic is exactly because I've done nothing for over a year. Yes I have a bunch of baby activities lined up I could go to weekly, a bunch of friends I want to go visit, as well as ideas for things Luke and I could go out and do together, but they are all optional, so the minute I feel a bit feeble it's easy to bail out, there is nothing to push me and force me to go, which I don't think is a good thing, I think I need that push.
*sigh*
I don't know how much of this melancholy stems from a conversation I had with a friend of mine last night about transplants. She had one a few years ago and now has a lung function of 80%. I would love to be that well again, to be that free again, it is so frustrating and imprisoning to be this ill all the time. I just want a break from it, just to have a few weeks of being well so I could get on and go out and do all the stuff I keep putting off because I feel to tired and unwell. I know I shouldn't wish myself to be unwell enough to need a transplant, but hovering just above the boderline where my quality of life is questionable, makes me kind of wish I could just have one, get it over and done with, and get on with living.
Anyway...
Luke took Fred home today, it was lovely having him here, it was so sweet to see him playing with Edward who he adores, it was also nice to see Luke having fun playing with his little brother.
I really enjoyed having the house to myself, it's such a rare thing as Luke hardly ever goes out without me, and if he does it's usually just to pop to the shops, it's never for very long. So it was a treat especially after it's been so manic here recently with all sorts of people coming and going, it was nice to have my nice quiet house back to myself.
Even more than the space though I enjoyed the anticipation of expecting Luke to come home to me, it may sound mad but I think it says a lot about a relationship if you miss the person you love and really look forward to seeing them again when you are apart, even if it is only just for an afternoon :o)
Edward checking out the newly made bed!
Anyway...
Luke took Fred home today, it was lovely having him here, it was so sweet to see him playing with Edward who he adores, it was also nice to see Luke having fun playing with his little brother.
I really enjoyed having the house to myself, it's such a rare thing as Luke hardly ever goes out without me, and if he does it's usually just to pop to the shops, it's never for very long. So it was a treat especially after it's been so manic here recently with all sorts of people coming and going, it was nice to have my nice quiet house back to myself.
Even more than the space though I enjoyed the anticipation of expecting Luke to come home to me, it may sound mad but I think it says a lot about a relationship if you miss the person you love and really look forward to seeing them again when you are apart, even if it is only just for an afternoon :o)
Edward checking out the newly made bed!
2 comments:
A couple of things which might help (I hope)
1. STOP with the guilt. It's not helping you, and definitely won't help Luke or Edward.
2. You need to slow down before you can start picking up again.
3. Your number one priority has to be your health, so you need to focus on whatever you can do to help support yourself.
4. Make a list of everything you do from the moment you get up. Anything you can delegate or just not do, remove them by asking others or deleting from routine. Slow down your routine, space it out and try and do less spread out more.
5. Nutrition wise...think you know the answer here. In case a kick up the butt helps you'd have a harder job getting onto a tx list in the future if they found out you deliberately didn't do your feeds (this is supposed to be a well-meant-but-firm shaking of shoulders rather than a nag poppet)
You know where I am if you want to chat xx
Toria,
I too have CF and I commend you on your efforts of trying to live a normal life with all the problems of CF.
I have one suggestion that has helped me a lot.
Turmeric is an indian spice that contains a strong anti-inflammatory compound called curcumin. Research is currently being done to see if curcumin can correct the CFTR protein responsible for the symptoms of CF. I have been drinking warm turmeric milk and have noticed that it makes me feel better. This is an age-old concoction used for respiratory symptoms.
This is how I make it:
Toast about 1 tbsp turmeric powder (from local indian grocery store) and 1/4-1/2 tspn ground pepper in a saucepan. Pepper contains piperine, which improves bioavailability of curcumin.
Just as it starts to smoke, add about a cup of soy/almond/rice milk in a saucepan, (don't use dairy, it promotes mucus production). Stir the milk to allow the turmeric to mix thouroughly, turning the milk yellow. Let the milk heat up. Add honey into the warm milk as a sweetener and stir until it is fully incorporated.
Pour the mixture into a cup and enjoy.
Drink this in the morning and before you go to bed. You should notice a gradual decrease in mucus production over the next few weeks.
I hope this helps, and best of luck!
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