I'm not managing so well anymore

[Wednesday]

I am finding it harder and harder. I’m told I’m positive and resilient and maybe I have been. I’ve managed with the help of AD’s to get through. Now I am so ill I can hardly get out of bed. I spend too much time in hospitals and around doctors. Yesterday I saw a public hospital doctor that seemed to take delight in making me feel like a nuisance. He smiled and made smart jokes with his junior doctor at my expense. He didn’t listen he was so horrible and rude. Too many health issues, too many medications and too many doctors.

I have such a little quality of life. While not suicidal now, I am incredibly sad and can’t see a way out of this. The medications I take for auto immune disease have destroyed and made unrecoverable my immune system. I knew this when I agreed to take them, but I didn’t realise that it would mean I would always have some sort of infection, like last week’s pneumonia. Of course antibiotics are no longer useful and I can’t develop any new immunity. A trip to a coffee shop can send me back to hospital.

My friends and children are lovely but dispersed and not close by. I don’t say a lot because well it’s bloody boring and I’m sure it is more than they all need to know about. There is nothing anyone can do. They try with their suggestions of a new exercise or superfood, this dosen't help. They don't listen, it's too complicated so I don't bother explaining. I get comments like oh yes xx had pneumonia and they are really well now. that's great for xx. Or if you follow this exercise routine your blah will get better. If only I could get to the gym I would be there twice a week. Or take magnesium etc, yep I know all this. I know they are flailing around and trying to help but it feels like they are out of their depth and just saying things that aren't helpful. I don't stop them or try to explain anymore. Over the phone they can't see me so its easy.

My partner is away and to self involved when he is here to understand what I am going through.

I’ve been so independent all of my life from when I was a child. I don’t know how to manage this, how do I get a life? I’ve tried joining classes but I end up getting ill and not being able to attend. Maybe this really is as good as it gets and all the doctors and medicines in the world are not going to make me well.

I guess that is the outcome that I need to come to terms with. I've always believed in quality over quantity.

I’m sorry, I just needed to get this out.

[Wednesday]

Hello Carol,

Poor you it sounds like your infection is a nasty one to make you so super tired. You didn't say your doctor prescribed antibiotics but maybe if this keeps up you should go back?

Oh you parent you, as if your babies don't know you have a stash of secret treats hidden around the place!

Thank you the coral garden flower arrangement is beautiful, I have it sitting in the middle of the kitchen bench so I walk past and admire it a lot.

I cant figure out why your hubby goes to bed at 6am, but what ever works I guess?

Oh I miss the weekend children events, birthday parties and lots of sugar, yeah! My daughter was a music student and we were always at some concert or other. I loved it, do an extra loud clap for me. Have a lovely weekend.

P is away, so I get to just do my own thing, though no car. Its too nasty outside to get very far anyway. I'm knitting a little tiny baby cardigan for a friend of my daughters. Knit eight rows, undo eight rows, and repeat..... I've been told to take the &%$#$ steroids despite my protests. It's good in that my hands don't hurt so much, so maybe not a bad thing. Now where did I hide those calorie loaded treats?

Hugs, xx

[Lost_Girl]

Good morning lovely Ava,

It is early am again for me but I am shortly to sleep. Hubby was up late with me tonight as we were all late tonight with our routine and I think everyone will sleep in a little before another big day out.

Today was lovely. My daughter enjoyed the party with her friend. She got a new dog soft toy and played the late afternoon with her favourite teddy plus the new one from the party. She was feeding them, dressing them and having fun. Later she dressed them both for bed and now they are all snuggled up asleep together.

I took her to a pet shop and she got to play with a pug. I filmed her and showed hubby so he can see the affinity she has with dogs. He seems to have come around and I hope he will fix our gate next weekend so we can look at getting one soon. Still no luck in rescue centres but I have found some ethical breeders as the non-allergenic breeds so far that I don't break into hives or have an asthma attack are cross breeds. I have done a lot of research.

Does your daughter still play music? What instrument did she learn? My son is learning guitar albeit somedays a little reluctantly. My daughter cannot wait to start. We hope to get her playing piano next year or if we cannot for money reasons then she wants to start in the band at school the following year. I hope I am back to work sooner if I can.

Ava, you sound like such a wonderful Mum. Your son agrees as you said therefore it must be true. How wonderful you are and far too hard on yourself. Enjoy your beautiful family lovely. How lucky that they are yours and they are truly blessed to have you.

I am glad you liked the flowers, they are quite a unique arrangement style. I had not seen gift flowers presented like that. You deserve to have beauty in your life. If you type Type "bluesbadday blogspot" into the internet you will find some beautiful photos of flowers and the first entry is worth a look at. Do you have some nice artwork of your own at home? Perhaps you can buy one to brighten your day. When we were on holiday at the farm I took a lucky photo of a waratah flower and it turned out beautifully. I hope to be well enough to sit up at a proper computer soon to see how big I might be able to enlarge it. It may be canvas worthy (crossing fingers).

How lovely you are knitting. Does the swelling and pain ease with the steroids then? I do hope so. Do you have any pain with it or is it under control.

Oops, long post. I bid you adieu xxx

[Wednesday]

Hello dear Carol,

I hope you did get some quality sleep. Was the concert fun, did you manage okay?

I’m pleased the party went well and a new puppy to add to the family and dress up for bed. I so enjoy the little ones imaginations. Don’t you just love the joy on the little ones faces when they come across a cute little animal.

Your husband doesn’t stand a chance a doggy there will be in this family. One look at the little girl with those soft eyes saying, please daddy… not a chance!

On the allergy front, I find my little poodle cross maltese or bischon fries breed fine. I did spend a bit of time cuddling up to various dogs though to check. He loves to play hide and seek. I hide a toy and he has to sit and wait until I tell him to “find it” or/and “where is it”. Yup bad of me I should have one command. Your children will love that game.

The rescue centre never seemed to advertise these sorts of dogs, I guess the move very quickly. I looked online for a year or longer and finally visited and hey had three in the centre. One sadly was a ex breeding dog:(

My daughter is all grown up now and hasn’t much time for her music, or room for a piano, but she still sings all the time. Last time I saw them my grandson was stopping her from singing a train song because she sang the toot wrong. I laughed because she has always hated my off key singing, it must be like nails on a chalk board to her trained ear.

Music is a great gift, once she found music she never looked back it is a part of her soul. She surprised everyone at her wedding by singing a song to her husband and had us all in tears.

If you have a school nearby with a music focus for your musical baby it would be fun to investigate. My daughter had a scholarship to go to a music school. The children are amazing, incredibly talented musically and often intellectually, they seem to go together.

Oh my goodness I just typed in "bluesbadday blogspot" and found a lot of BB, I forget that BB it is on the internet!

Clever you finding a beautiful Warratah to photograph. I so wish you to be well enough to look at them it a computer screen. I have some travel photos I’ve taken and framed in the house.

I take steroids all the time for pain and raise and lower the dose as I need to flare-ups. I’m not too bad (apart from the lung thingy grr). I have lots of other meds too. My hands are pretty swollen, which means the inflammation is not under control, but this is the way it is.

Hugs dear one, xx

[Clues_Of_Blue]

Hello Ava,

Sorry I haven't been around much. Busy busy, work and all. Sounds like our respective bugs aren't going anywhere in a hurry. I'm thankful I can more or less function around mine, even though it's pretty annoying.

Thanks for your kind words about my pictures. I enjoy doing them. Framing stuff counts as arty, as you get to enjoy it on display. There's a certain art to gardening, too, in my opinion. Love it, though I'm not at all good at it. If you can't get out in the garden, why not bring the garden to you? I'm sure there are plenty of low allergenic indoor plants you can fill your space up with at home, and if getting out is problematic, online shopping is always an option, both for plants and solutions to how best to use your space.

I'm sorry you have this situation with your partner's family. As you say, maybe it's best to set it aside if it can't be resolved. I'm glad you have your daughter and her family to give you the love you deserve.

Glad to see you are getting some knitting in (a nice creative project). What are you making at the moment? And if you're good at needlework, why not have a go at something of that nature for wall art, if you want to get more arty with the skills you have? Like latch hook, or cross stitch. Just a thought.

I may have been busy, but haven't forgotten about you. Hope that swelling goes down, doesn't sound fun at all.

Blue.

[Wednesday]

Hi Blue,

Yes we seem to have very tenacious bugs.

I have plants in the house too, but they aren't as satisfying as getting out into the garden...turning over the compost, striking cuttings, weeding and mulching etc.

Thanks for your suggestions, I'm not a details sort of person so no good on that front. I can only do a little of anything, which frustrates me enormously. I used to always have a project I wanted to do, paint a room sew something, help a friend with their garden, this is not so possible these days.

Th swelling wont ever go down. The latest greatest medication (LGM) help but have wiped out my immune system including the sort of immunity you gain as you grow up. Hence no immune system. If I get an infection, which I do regularly the LGM stops working.

I would like to go to an art class, but not keen to pay for classes I can't get to because I can't get out of bed or my hands or other joints aren't aren't working or I have another annoying infection. Sorry I appreciate your thoughtful reply. I have been through every scenario I can think of. I took my dog for a short walk yesterday and fell over. This would not be a big deal for most people a bruise or too. My knee, ankle and hip are swollen and I'm limping badly, what a chook! There is always another med in my personal pharmacy I can resort too. I don't say much to those around me because it is boring and it's easier to talk about their heath, work, personal issues.

Goodness I do sound grumpy.

I hope you and your lovely man are doing well. Down with bugs!

x

[Doolhof]

Hi Wednesday,

Just want to let you know I am thinking of you.

Many years ago I had a back injury resulting in a back operation. After that I spent a year practically living on the floor. If I was able to make it outside I would lie on a mattress to water the lawn. It took a couple more years before I could sit long enough to do much of anything.

I have photos taken on various Christmas Days with me lying on my mattress under the Christmas tree.

During that time, I had a girlfriend who went on a world tour. My husband went to the library and borrowed travel stories for me, so in my own littler way I felt like I was on a world tour as well.

At that time I had no idea if I would ever be able to do much of anything anymore. Thankfully, I have made an amazing recovery. My injury and strong medication have had some effect on my health. I never knew back problems could lead to so many other issues.

I'm so sorry to read that your struggles continue. You mentioned art classes, I have recently been looking at painting tutorials on the computer. Could you find things that you are interested in? It is not the same as joining a class, but could still be enjoyable.

From Mrs. Dools

[Clues_Of_Blue]

Oh dear, Ava, it does sound like you're having a crummy time of it. I do understand your frustration, honestly, you don't just sound grumpy. I hope it helped a bit to vent. At the risk of perturbing you with another of my well meaning suggestions (by all means tell me to bog off, if you like), if you can't attend an art class, have you considered an online art tutorial? There are some pretty good ones, and various other bits of info online. That's how I learn all my arty things and photographic techniques, as I'm a bit stingy and a loner much of the time anyway.

Yep, bug notwithstanding, my lovely man and I are doing well. We had a lazy night last night, a few drinks and listening to music, it was really nice.

As for our bugs, let's take them out back and give them a sound beating with a stick.

Blue.

[Wednesday]

Hi Mrs Dools,

Thanks for posting. Your back injuries sound horrid and back surgery must have been a horror to go through. I'm glad that you found a resolution. It does make sense that back problems would lead to lots of other issues I hope you are coping okay with them too.

My illnesses /injuries are not new to me just hard to hide anymore. Medications help but cause more issues. I'm having trouble accepting that it is a downward spiral and not fixable. I've been so independent for all of my life I hate to think what the next stages hold for me.

An external art (or activity) class would mean that I get out of the house and see some people in the flesh (medicos don't count)! It is the wrong time of year to join though.

Thanks. x

[Wednesday]

Hi Blue,

You are such a sweetie. All suggestions gratefully suggested, I just need to get my head on straight! You are much clever than I and sadly detail is not one of my strong points. My knitting is a mess I am supposed to have 152 stitches and I have 120 stitches, see what I mean, agh.

Goodness your bug should have cleared up by now, have you had it checked out? My is going to hang around because I don't have and can't develop an immune system. Have to have bug beating party though, with wine of course.

Hope your re enjoying some more lovely man times.

Hugs, x

[Doolhof]

Hi Wednesday,

I'm one of the lucky ones! My back injury does prevent me from doing some things, but there is still so much I am able to do.

I'm so very sorry to read of your situation. Hopefully you find ways of coping and making the most of each day how ever you can.

Your knitting sounds a little like mine, only mine is full of holes where there shouldn't be any! I tried some quilting once and ended up with gathers in the quilt, that is something that is not supposed to happen!

It can be very frustrating when medication has so many side effects! One tablet my Dr has put me on is causing a bit of dizziness. Yesterday I was walking sideways instead of straight ahead. I thought it was hilarious! For a few seconds, no mater how hard I tried to walk straight, I ended up in the garden instead of staying on the path.

Guess I might need to tell the Dr about that side effect! Ha. Ha.

All the best with your knitting!

Cheerio from Mrs. Dools