Chronic pain & illnesses affect the whole family...

I wanted to just write a little bit about how grateful I am for my amazing family who support me and help look after me when I'm struggling.
This morning, I got some extremely sad news about a family friend who has been very ill in recent years and is mostly now in a wheelchair after a stroke. It seems her husband committed suicide sometime yesterday afternoon/evening as he couldn't cope with the demands and struggles his family were going through. I can't even begin to imagine the awful grief his wife and daughter are experiencing just now but given how upset I am, it must be unbearable. The reason I wanted to write about this tragic event was to highlight how much the rest of the family is affected when someone requires extra care due to pain or illness.

I have been a carer for my son who is autistic and witnessed firsthand the effect dealing with the daily issues not only had on him and myself but also my daughters, husband and other family. I have since been the one who has required extra care due to my pain and dizziness. Sometimes I can't join in with fun family activities and have to go and lay down or just watch, being slightly aloof. Sometimes, my kids have seen me writhing in agony with pain and vomiting, or suddenly being unable to see in the middle of Tesco due to a occular migraine. They have always stepped up and done what has been needed to take of me. My husband and parents are also there to help me out with the practicalities of daily life, like cooking, cleaning and doing the shopping, but also to offer emotional support when my future is looking very bleak to me.
This is something I truly appreciate, and I do the best I can to give them the support they need in ways I am able to. But I know that it's hard for family members in these situations. You spend so much time focusing on the care you need to provide, doing the mundane everyday tasks like the washing, putting the bins out, making cups of tea and a million other things which constitute life. It's very easy to forget that as a carer, you have needs too, but I know from experience myself and seeing friends, family and just people I know a little bit ignoring their own needs because they have to be strong for the person they're caring for. It takes so much strength to care for someone else in this way, when it seems obstacles are constantly put in your path and you have the workload of 3 or 4 people to try to juggle, especially if you're working as well.
I think it's very important to tell those around you, how much you love them and appreciate their help and also to give that love and help to those around you even when they don't ask for it.
Life can be beautiful and wonderful a lot of the time, but even the most happy lives have difficult patches and I feel the only way any of us get through it is to help one another, just because we care. I have told my family today how much I love them and appreciate them and they have been doing the same.
I know I am very lucky to have an amazing family around me and supportive friends too, but I have also always been aware that some people who don't have family at all or their families can't support them as they need support themselves. I try to be a kind and thoughtful person to everyone around me and am proud of all my kids who show amazing empathy towards others. I feel even more compulsion to just do a little thing here and there when I can to help someone else. Whether it's buying a homeless person some lunch, helping a parent with their tray in a cafe or just whatever seems necessary in the moment, I would ask that anyone who reads this, tries to do something to make someone else's day a little brighter and better.
And to the many people out there who are feeling like they can't go on for whatever reasons, please reach out for help.
And if someone tells you they are struggling with life, try to take the time to listen to them and get them the help they need. Unfortunately, us humans seem to be pretty amazing at acting and putting on the face we think others need to see and we don't want to show weakness or be a burden on others. Just know, you're not a burden, you're a human and you matter.
And those who just have bad days, weeks, months or years - talk about it. Depression really isn't something to be ashamed of. Struggling cope and literally crying over that milk you spilled (because it was last straw that day of things going wrong - I'm sure we've all been there), is OK. Let your kids see that sometimes things get really hard and you want to give up but instead you'll sit with them and eat ice cream for tea and watch Cinderella for the 367th time. You can try again later and it'll probably be fine. Cry when someone in the movie dies, and don't be afraid to show it - it's perfectly normal to cry at this part. Give yourself a break. And give others a break.

There's so much more to be said about this issue, but I think I've said what I feel is important and it's getting late.
take care 💗

Struggling

Well I haven't posted for a while as I've been really struggling over the past week or so. Maybe my attempt to try to do normal things wasn't a good idea! Pain and dizziness has been vastly increased and sleeping continues to be a problem which just seems to get worse.

I've been doing a lot of research into sleeping positions which might help but they all have issues! Laying on your back is often said to be the best position for sleeping but I find that my lower jaw tends to drop causing my mouth to open slightly and this causes pain and sleeping or breathing with your mouth open isn't good for the jaw!

I'm going to see a sports therapist soon to see if I can get some of the tension in my sternocleidomastoid and trapezius muscles released. I also go back to see the surgeon next week for a review after the botox. I'm really hoping that he has something else to try and doesn't say it's time to get on the waiting list for joint replacement! We'll just have to see.

Take care 😵

Normality??

My husband is away for a few days getting surgery on his eyes - they are actually replacing the lenses rather than laser surgery! Anyway, I decided that I would a bit of an experiment while he's away to see how well I can function.
It started well this morning - I went back to sleep for an hour and then lay for awhile semi-comatosed, thinking that I wouldn't bother after all! Anyway, I pushed through and had a bit of lunch, then hung some washing out and cleaned the bathroom. I was sweating like mad and immediately felt like that axe in my head reappeared, but as I often feel like that anyway, I'm going to push on. The kids have been informed and told to call an ambulance if they find me collapsed in a heap somewhere!
After resting while doing some admin work on the laptop, I'm going to have a bath in the lovely clean bathroom before collapsing again (baths and showers always tire me out!) for a little while before tea - which is going to be easy as it's leftovers which just need reheating in the microwave.
I have a few other housework things lined up for tomorrow so we'll just see how it goes.
Take care 😳

Creamy Mushroom Pasta

Hello

I'm still struggling with sleep. I tried a different tactic last night but was still awake until the wee small hours. Feeling a lot of pressure under my eyes, at the top of my nose and over the top of my head today along with increased pain on the right. Anyway, I thought I'd share another recipe - I made this one last night for my dinner as the rest of the family were having pizza.

Creamy Mushroom Pasta

I used small soup pasta shells for this but you could use other pasta and cut it (or break it before cooking).

Ingredients:

3 large mushrooms, chopped very finely

4 spring onions, chopped very finely

2 cloves garlic, crushed

150-200g pasta

1/2 cup of cream (or dairy free substitute)

Method:

1. Cook the pasta according to instructions.
2. While the pasta is cooking, fry the onions and garlic in a little oil, until the onions begin to soften. Add the mushrooms and fry for about 5 minutes.
3. Add the cream and some seasoning to the onion and mushroom mix.
4. Add the pasta to the creamy mixture and stir to distribute evenly. Serve and enjoy.

This will serve 2 people. As I struggle to eat a lot these days, it made 3 portions for me and I froze the remaining 2 for another day. Also, the measurements are approximate - experiment to suit your own tastes. You could use regular onions or shallots, miss the onions out completely (my dad's choice!), substitute with other veg (I'm thinking courgettes would be good and are still nice and soft). I feel cooking should be fun and a personal thing as we all have different tastes or dietary requirements. 

Have a great weekend 😎

Tiredness

I hardly got any sleep last night between both sides of my jaw hurting and my knee and sciatica flaring up too.
I decided to have a break from trying after a few hours and a few more chapters of my book. Eventually fell asleep and caught up by sleeping most of the morning. Why is it that I can sleep first thing in the morning but not at night when I'm meant to? No matter what I try, the only times I fall asleep quickly at night is when I'm beyond exhausted, and then I wake up really stiff! I'll continue experimenting with different ideas to aid sleep and hope I hit on something that works consistantly. I think some of it is psychological as I feel very sore on the side I've slept on (nearly always the left as the right is too sore to manage more than a few minutes) when I wake up. The rest is physical as the pain just gets in the way.
Take care 😴

Paying The Price

After my day out yesterday, I really struggled getting to sleep last night. I feel like I could write a book about the many possible sleeping positions I have tried - a kind of Karma Suture of sleeping!!
I'm sore as always today, but feeling reasonably well for a day after some kind of activity. Having said that, I haven't done much yet as I managed to catch up on a little bit of sleep this morning. Hopefully the pain levels will remain low and I'll get a better night's sleep and then have the energy to do a bit of housework tomorrow.
Take Care 😊

Out on day release!

So I went into town today. We dropped my daughter off for her college induction and then I had half an hour of fun at hobbycraft before a cuppa and a muffin (cut into little pieces of course!). And then we went to see The Meg at the cinema. A couple of hours watching the Stath playing the OTT hero is always fun! I was already struggling after that but we managed to get the weekly shop done on the way home.
I've been in bed since but hopefully it won't take too long to get back to my version of "a good day".
Take care 😴