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Raisie Bay

hospital

Chronic Illness – What Am I Looking For?

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Each month I join in with Sheryl from A Chronic voice with her writing prompts. This months prompts are:

  1. LOOKING
  2. PLAYING
  3. JOINING
  4. INVIGORATING
  5. DITCHING

Looking

In just a few days I’ll be having large Magnetic Resonance Imaging machinery taking a look inside my head and neck. Oh, I hate the MRI machines. The first one I had when I was admitted to hospital four years ago. They didn’t know why suddenly I could no longer walk or move my arms so they sent me down. I had no idea what to expect, I was already terrified as I didn’t know what was happening to me. One day I was fairly okay, the next I was paralyzed and I had no idea why. They took me down to the MRI and put me on the bed. They fastened my head down in a casing and put me in the machine. My nose was just inches from the top and I panicked. In fact I panicked so bad they had to take me out.

The next day I was given a sedative before they tried again. I got through it, but I was in there for an hour and fifty minutes. It was my worst nightmare and I hoped that I’d never have to go through that again. A wuss I know, but I am claustrophobic and I don’t even like small toilet cubicles. To me, It was on par with being buried alive.

I’m dreading Wednesday, but I’m more prepared now. I already have my sedatives to hand. I will take one in the morning and another as I arrive at the hospital. Thankfully, my MRI is real early so I don’t have to spend the whole day worrying about it. I’ve been practicing breathing and mindfulness techniques to get me through. I can do this, even though I’m not looking forward to it.

QE Hospital Birmingham Looking at the hospital from the front.

Playing

Playing is associated with fun stuff, but at the moment, I don’t feel like life is much fun. Everything is playing with my emotions to the extreme. I feel like I can’t cope with the pain, the struggle of day to day life and dealing with my body and what it keeps throwing at me.

But, I do have kids and sometimes the best times are playing games with them. I can’t do the things I used to, but we can still get out a board game or a card game to play. It does help to take my mind off things looking forward to playing games with my little ones.

Many years ago I had a pc game on a CD which I bought from the cheap basket at PC World. It was called Mahjong Four Winds. I have long lost the CD and despite searching I’ve never found anything that played like it. I loved that game so much but nothing compared. Then my eldest son came to me with a game called Mahjong Souls. It’s not identical, some of the rules are different and the cards are not quite the same. But the graphics are very similar and the game play the same. It has lots of extra features where you can play against other, real people, and win prizes. You can also choose who you play as. I love it, and it’s a great way of passing time.

Joining

I don’t know if you can call this joining but I couldn’t think of anything else to put in this prompt. This week I am joining a therapist to talk about my feeling about my illness and life in general. I’ve been waiting a long time to do this, I’ve spent so much time thinking I can do this alone. But I can’t, and I know that now. So, I’ll be joining up with someone else to help me with the mental issues involved in dealing with daily pain and disability. I’m looking forward to coping with life better in the future.

Invigorating

This is another area I am having difficulty with. I find it hard to find anything in life invigorating at the moment. I know, I’m all doom and gloom. It’s not good for me though. I know that the brain and body are connected, the sadder I feel the more pain I feel. It’s the same for everyone.

Maybe I could look for something more invigorating. I can’t do much physically so I could focus on something more stimulating for my brain. Each year I try to learn something new. Last year I did a poetry course, I’m still looking for something I can learn this year.

Ditching

I’m going to be ditching some bad habits. Something that is never easy to do. I remember when I gave up smoking, some fifteen years ago, and I thought that was really hard, but now I know it was one of the best things I could have done. So what else can I ditch?

Unhealthy food comes to mind. I find that when I cut out certain foods I feel better. I really need to get more of a grip on this. I’m overweight, but it’s hard to lose weight when you are immobile, and I barely eat a full meal. I’ve started having trouble swallowing a lot of food lately, another new symptom perhaps? Maybe something the MRI will shed a light on.

So, ditching crap food is a good start, and also the habit I have of procrastinating. Now, I can’t do much, but I can make others, or try to make others do things. I’ve been so rubbish at this. So, the bathroom needs painting, I can’t do it myself, but I don’t ask for help to do it, or I don’t insist that it should be done. I’m going to ditch procrastination, but not for me, for my whole family. Even the kids are no longer going to be sitting around doing nothing all day. It’s no good for anyone. They probably won’t like it, and I’m going to find it hard, but I think we will all benefit in the end.

Final Words

Physically, things are getting harder for me. I’m falling or stumbling more often. I’m having to use my wheelchair more inside the house. I’m not sleeping well at night, which means I tend to pass out a lot during the daytime. I’ve had trouble adjusting to my new medications but since I stopped the IVIG I am taking so much more. I’ve also noticed a lot more symptoms that have crept up on me. Life isn’t so good right now, but I will keep fighting and hopefully I can turn things around and make life better for everyone. This year I should be getting my lift and wet room fitted in my home. It will be so much help, so that’s something I’m looking forward to.

February link up from a chronic voice

Previous post Welcome to 2020

Word of the Week 2 – Plans

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Hello and welcome to the home of Word of the Week. A nice and simple weekly linky, with everyone welcome to pop by and share. The idea of the linky is to reflect back on your past week and share it with us. It’s great if you can sum it up in a word or phrase, hence giving us your Word of the Week. My word this week is plans and you can read more about that below.

I’m not totally strict on using just a word or phrase. But please try to stick to the theme of summing up your week.

There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. I will read and comment on all posts and tweet them out for you. I also have a Pinterest board devoted to Word of the Week and I will add posts to Mix  Please add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW

Word of the Week is open from 6am on Friday Morning to 12 noon on Monday. Plenty of time to join in!

If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.

My Word of the Week

Plans

plans

This week we had many plans. Some good, some not so, and some changed.

The kids didn’t go back to school until Tuesday but we had plans for Monday. First it was a hospital cardiology appointment for Star. Then we planned to have lunch in town and a little walk around the shops. We did have lunch but the walking around was abandoned as we all just wanted to go home.

Tuesday the plan was back to school. I think it’s going back after Christmas that I dislike the most. The kid’s have so much fun with all their new stuff and games and it just seems a shame that it all has to end and everything cleaned up. It’s truly the end of Christmas. The girl’s had a good day, the Little Man not so.

Wednesday, no plans, which was good because I was really not well all day!

Thursday it was time for another hospital appointment for Star. This time to see her neurologist. We’d made lots of plans on how we were going to pick her up from school just after lunch, then Graham was going to leave us at the hospital while coming home to pick up the other two from school. Then he was dropping them at my sister-in-law’s before coming back to town to pick me and Star up. It was a plan, but it was also stressful. Star was stressed about leaving school at the right time. I was stressed at being left alone with Star in town for nearly 3 hours, and Graham was stressed about driving in and out of town and dropping the kids off and getting back to us in time.

But, on Wednesday afternoon we had a call from the hospital to say that the appointment had to be re-arranged. After all that planning!

The change of plan had a big effect on Star and the stress ended with her not going into school on Thursday.

Future Plans

I’ve also been thinking of some future plans this week. I’ve booked tickets to another ballet in February, I’m taking my friend to see Matthew Bourne’s ‘The Red Shoes’ and I really can’t wait. I love Matthew Bourne’s take on the classics.

Then towards the end of the month it’s my eldest’s birthday. He want’s to go out for a meal as usual but we are having trouble figuring out plans. He wants to go out lunch time with the kids and in the evening with the adults!! I’ve asked him maybe to split it over two days as I don’t think my stomach could take that much food.

Now it’s over to you, what have you been up to this week?

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Hospital and Family Memories

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Last week I left you as I tackled my roller coaster life. Well, I’ve been so busy since then, but things seems to be getting better. With school visits, shopping and a day out at an inflatable theme park spirits have been lifted a little. Even though I’m a little exhausted too.

Hospital Memories

This week I will be in hospital for the first two days, so I may not be around much. Or I might be if I can get on the internet while in the hospital and I’m bored enough. The hospital is like my second home now, I don’t even have to give my name when I walk into the reception of my usual ward.

It takes me back to just a few years ago when it was the same for Star at the Children’s Hospital. It was Christmas 2013 when she was first fitted with a halo, how appropriate. She earned her nickname Star for all that she went through, she truly shone despite the pain and sadness. Now she has to see her consultant just once a year, but she still has to see a nurse every three months and has another appointment with the very busy geneticist next year. The good news is that she seems to be doing just fine, and she copes so well with her pain. Yes, she is a Star!

Family Memories

This weekend Graham’s brother came up to visit from his home in Dorset. He brought his two young children with him. We had Graham’s Mum come to visit too and they all stayed for the day. It was so lovely to have family around, the kids ran riot and made an awful mess, but I loved it. I do think that my kids are way to quiet and tidy sometimes. When my older two were little the house was never tidy, but they didn’t have laptops or phones to play on. They did have the Nintendo, but still liked to play and make mess. My kids, even when not on devices, will do quiet stuff like draw or read. The Little Man loves his Lego, but he always puts it away after playing. 

Having family around brought back memories for both me and Graham. When we were young the house was often full of cousins and aunts and uncles. We used to have visitors all the time, or we’d be the ones visiting. My mum had five sisters and two brothers, so there were many, many cousins. Usually, me and my two cousins of a similar age would be on tea duty and be sent to the kitchen on a regular basis to make pots of tea for everyone. 

These days it seems a rare occasion when we have lots of family visiting, or we visit family. Most of my family dissipated when my Nan passed away, but one of the main issues is the age differences in my own family. Two of my  brothers are a lot older than me and their children are even older than my eldest children. So the only cousins my youngest kids have are Graham’s brother’s and, as I said before, they live in Dorset. 

Families tend to be smaller these days and families don’t always live close together any more. I know that when I was little, four of my aunties and my Nan all lived in walking distance from us. 

I do miss those family days though. Even though it meant more arguments, more mess, and definitely more cups of tea. It was never dull.

Do you come from a large family, or have a large family now? Do you get together a lot with family?

I’ll leave you with a photo of a tired out Christmas cat 🙂 

black and white cat sleeping on the back of the settee with Christmas decorations in the background.
Mix It Up Linky
                      

Tales From Mamaville

Debs Random Writings
Sticky Mud and Belly Laughs

Déjà vu

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Last week I was back a the hospital to see a different Doctor. I almost got the times wrong but thankfully I checked at the last minute. I seem to be doing that a lot lately, getting times wrong and missing appointments. Or just simply forgetting to do something that I’d promised to do. Anyway, as usual I left the hospital feeling that it was ‘all in my head.’ Why do they do that, unless you are actually at death’s door Drs just don’t want to listen. I had symptoms of my illness for about three years before I lost the use of my legs, but no-one would listen. What if they had? Would I still be able to walk now? Why does it keep happening to me?

It also surprises me at how little attention my condition warrants from doctors. I mean, I have an ultra rare condition that barely any doctor has heard of. I have been diagnosed by a very reputable neurology consultant, it’s not something I made up. If I was a doctor I’d think, ‘ooh that’s interesting I’ve never heard of that, tell me more.’ But they show so little interest, they don’t even ask how it affects me. I sometimes wonder if they would show more interest if I gave it it’s original name Moersch and Woltman Syndrome, maybe Stiff Person Syndrome sounds a little naff to them. The Doctor I saw was also under the impression that I was still diagnosed as having Transverse Myelitis, maybe he knew what that was.

Grumble over, I am having further tests, just in case. Fingers crossed that the doctor is right and there is nothing to worry about. In the meantime I’m going to assume it’s all in my head, and use my head to stop it!

It Happened Again

On Saturday, me, Graham and the Little Man had to go and see a specialist doctor about our injuries from our car accident a month ago. The girls stayed home with their older siblings. We were at the surgery for about an hour, then did a little shopping before coming home.

Graham bought a packet of peanuts to eat in the car. He said the last time he bought peanuts was when we had our crash. I just had to point out that our crash also happened on a Saturday afternoon and there was just the three of us in the car.

Just a few minutes away from home, Graham stopped by a parked car because there was another car coming up the other way. Then, crash! Someone went straight into the back of us. Again! 

Thankfully, it was not as bad as our last crash and I did not need to be stretchered off in an ambulance. The Little Man was upset but unharmed, so there are always things to be thankful for. Tell that to the car hire company that is loaning us the brand new Mazda while our car is still being repaired from the last crash! 

Busy

As for the rest of the week, I’ve been pretty busy. As well as going out Friday and Saturday, I also had to go out on Monday and today, Tuesday. I think I may need the rest of the week being glued to my settee. That probably won’t happen though because today it’s treatment day so, as long as I avoid the side effects, I’ll probably be feeling pretty good for the next week or so. 

As well as going out I’ve also managed to finish two crochet projects. One is a Christmas present so I can’t show you that. But I’ll show you a pic of my blanket which took me ages. It’s a gorgeous soft wool and I love the colours. I crocheted it in diamonds and then had to sew them all together. It’s the first time I’ve done this type of project and I found it hard work. I am happy with though.

a crochet blanket in red, white and blue diamonds

Debs Random Writings

It’s a Week of New Things

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a purple star with the word, new, in the middle

Last week my word of the week was School as we had found a new school for the Little Man. We went out on Saturday to buy his new uniform and although we got everything we need the day didn’t end well. More about that in a little while. First I want to tell you that the Little Man absolutely loves his new school. He’s made lots of friends already and thinks his teacher is great. In one week I’ve found him keen to read his book just so I can give him his comment in his reading log (he’s never been keen before) and he’s been singing songs to me that he’s learnt. 

He is happy and excited to go to school in the morning and comes home bubbling. I have missed him like crazy but it was certainly the right decision to send him back to school, he is so much brighter.

The Crash

We also have a brand new, I mean, so new it’s only just over a month old, car! It’s a top of the range Mazda with leather seats and so many features, including many safety features. Graham is in love already. BUT, it’s not ours really, it’s a courtesy car while our poor Skoda, Bernard, is being repaired. 

After uniform shopping on Saturday we were involved in a car accident. While waiting to turn right another car ploughed into the back of us at speed. Thankfully the girls were safe at home with their big sister so there were only three of us in the car.

Graham was fine at the time but has since become stiff and sore from whiplash and is suffering from recurring headaches. The Little Man was hysterical, but it was more fright than anything. He hit is head off my seat, despite being strapped in. He has bruising on both his legs and also has a stiff neck and shoulders. 

I don’t even remember what happened but I remembered seeing blood from my foot and my shoe was missing. My back was really hurting and I’d gone stiff in spasm from my condition. I can only surmise that the shock of the accident caused my startle reflex to set in and I somehow managed to get pretty bashed. I was taken to Accident and Emergency by ambulance, but my experience at the hospital was not good. The Dr had no idea how to treat me because my stiffness meant he couldn’t make his usual examinations, after poking my back and sending me into a massive spasm again. It’s difficult to examine someone for spinal injuries when they already have a knackered spine. I can’t blame him for not knowing what to do, nobody ever knows how to deal with me.

I left hospital unable to weight bear on my left side and my back has been hurting like crazy. But, it is slowly getting better so I just need to heal. If it was getting worse I would be worried. About three days after the accident I also suffered from the stiff neck and shoulder pain. My ankle is also swollen, bruised and grazed. But the main thing is, we survived. 

New Plan of Treatment

On Tuesday I was back at the hospital but this time for a scheduled appointment with my consultant. We first discussed the IVIG which I am feeling benefits from now that I’ve been having it for a year. Changing it to every month, rather than every three months, has made a big difference. 

Then we discussed all the new issues I’d been having and he told me that they are all side affects from my medication. I’ve been taking this medication for three years now without side affects, but now that the IVIG is in my system there seems to be a battle going on with the IVIG and my medication. So, the plan is to reduce the medication and adjust the IVIG so that I get the best benefits without the side affects. 

It sounds good to me. I’m quite happy to be pumping less drugs into my body, especially if it gets rid of the side effects.

Other issues I’ve been having can be put down to me lacking in B12 and folate. My medication can stop my body from absorbing these from my food so now I am taking supplements for four months to help. 

I am actually beginning to feel more positive. I know there are other drugs that can be used to help my condition, but as it’s so rare it’s hit and miss as to whether they work. So although, although I’d give anything to take something to make me better, the thought of taking even more drugs was making me feel anxious. I’m so hoping this works out, my consultant seems quite confident it will. 

The Reading Residence Debs Random Writings