I never thought I’d say this be I feel settled, maybe I little too settled back at my family home.
It’s made it easier having my washing done, help with food cooking, cleaning up and having help closer.
I find it very hard to feel get settled. I hate, moving here and there. Once I set up shop I set up shop.
That’s why I rarely come back here and stay. I have all my pillows and duvets in place and I never travel lightly with all my medication, food and padding. It takes so much energy and zaps me so much moving around. But now I have all of that here and I am not moving every couple of days I don’t mind being here.
I worry about losing my independence or not feeling responsible for myself but I am so emotionally and physically worn out by my hospital stay that I am quite relieved for the extra helping hand.
The first few days being home and out have become a little bit of a blur. I was so relieved to be out, I know I tried ( although some posts were ranting) I did try to be positive when in reality I was really struggling.
I always gets mad when people say they are starving and need food right now. When there are people in developing countries who haven’t eaten for days and are starving and the people complaining ate just three hours ago. Yet I was starving. It goes way beyond the feeling of hunger.
I had gone through the initial hunger stage in the first 24 hours, then I experienced the stomach ache from hunger for 48 hours or so. Where you couldn’t sleep not because you were being checked up on every 5 minutes but your stomach was in pain and all you were craving was food. Then you go through the nothing else is on your mind but FOOD stage. I didn’t blog at all in the first few days I was struggling to adjust to not only being in an alien land and so far from home but experiencing all this added new pain.
Walking into the dining room with food smells and seeing everyone else eat was so hard. Knowing that you wouldn’t and weren’t going to be getting anything for hours was torture.
I am still struggling to come to terms with the fact I am able to access food whenever I need and want. Sometimes at night I finish my after dinner snacks and although full I question whether I am full... will I be able to last until breakfast in the morning?
Or will I get hunger pains and begin dreaming about food?
Of course I don’t. Yet mentally you don’t think about the damage it does to you. The physical damage is just the half of it.
With the help of LifeSum I am able to track all my food and ensure I am getting what my body needs.
Over the last week I’ve learn that yes intake wise I was maybe slightly down on what I needed but not overly. It’s the proteins I’ve been lacking. I’ve had to try and introduce a soya yoghurt with every meal and cut my carbs slightly.
I always felt like I needed carbs at every meal but that’s one thing I’ve learnt with LifeSum. I don’t. I am always either bob on or grams over on the carbs. By 4pm yesterday I was already 8g over on my carbs but down on my proteins. I seem to always be bob on with my fats too which is good to know. So instead of having potato with my meal I added an egg white, yoghurts and nuts.
This I wouldn’t normally have done.
I lost 5.5 lbs in a week when I was in hospital and was able to gain 5 back in the second week. Been back at home I have been able to gain another 2-3lbs on top of that.
Which of course is fab, but when they said this morning that I was up on their last recorded weight on the 7th November you wish it was the 14th November and you could elimate that blip. I know of course we can’t have everything and I should just be happy with a positive result. I always want more and better though.
That’s why I am still here fighting I guess.
I am just sick of the blips that you just pray for a good upward run.
My liver has been giving me a lot of jip in the last few days and I been really struggling with confusion, pain and feeling really sick.
Too much noise and noise coming from different sources really knocks me off. It makes me feel so dizzy and my mind can’t work out what to listen to and sends me into panic.. it all gets to loud and I can’t cope.
I don’t know if this is a new symptom or whether it’s just more of an issue at present with being around more people and not in my own company with the telly forever on low.
Light, movement and noise is never good.
And when not sat with family I rarely have my telly on.
Yesterday I was beginning to allow my heighten symptoms ( herxing from re-starting my medications ) to get me down.
I couldn’t taste my food, I couldn’t concentrate on anything and that was annoying because I am always trying to be proactive and keep going, I was struggling to breathe, aching all over like flu and my joints just throbbed.
All the noise and sounds were confusing me to the point that it was making me feel more poorly because I couldn’t focus on dealing with my symptoms or focusing my efforts on one task to get the job done correctly.
You really do doubt yourself at times if you will be able to simply move and get up. Knowing the pain is inevitable is a hard pill to swallow.
I find it most different at night and first thing in the morning - when my body is most tired. The thought of pain, is just too much and often drives me to tears.
A fact I don’t like admitting.
All of you see me looking ( ok, often half looking half dead) but I stand before you, make conversation and seem relatively pain free.
Last night I knew I would struggle this morning and I knew I needed to be at the doctors, up and sorted this morning.
So I ensured my clothes were laid out and my alarm was set.
I needed the toilet before my alarm and so knew that getting up and down would be a struggle so yes, I did get sorted and dressed whilst I was up!! Then got back into bed after getting dressed.
I can’t explain how painful and zapping the mornings and evenings are.
I need a good 20minutes post breakfast to re-charge.
I always ensure that I am up hours before leaving because I know the agony it causes me. At night the rushing around cooking and the stress of the day hits me and by 10pm I am done. Finished and complete.
This post alone has taken a lot of my day.. as my symptoms are clouding my productiveness .
After missing posting properly yesterday because of my symptoms and with my positive start to the week I wanted to post and inspire you all despite all this rain, colder days and darker nights that we can all keep positive keep fighting and keep our fires burning.
That we are tested but we can keep fighting.
I encourage anyone with a chronic illness especially to try LifeSum so you can ensure you are getting everything your body needs to fight infection over the winter!
I have also got my own blood sugar checker so that I am not feeding my Lyme and infections with refined sugars and allowing them to feed off foods I am putting in. Which is another reason I need to keep my carbs in check- many are full of refined sugars. And may be why I haven’t been able to stabilise my weight. Along with looking into purchasing an oxygen reader. As when I have consumed too much wheat my breathing suffers and my oxygen levels drop. Yes it may seem a lot of effort but it’s all helpful to track where we can make adaptions, changes or /and improvements. Nobody can teach you in a classroom how to live and deal with a chronic illness.
Unfortunately we have to experience a lot of long term pain, mistakes, hard hitting lessons and blips. I guess that just sums up life though and our brains may not always be sharp but boy do we learn a lot of knowledge and a lot about ourselves. One of the best perks is having 5 pillows and 4 duvets on your bed, a tablet holder to watch tv from
The comfort of all your padding and it being totally acceptable. Always see the positives!!
I have waffled on way to much now and have so much more to say but I shall give your eyes and my brain a break.
Have a blessed week and keep wrapped up warm.
S
Xoxo
