Life, please... no more

[Kahlia1981]

I'm currently out of hospital on my first overnight leave. Despite being happy and excited I'm quite nervous because we don't have the equipment we really need. The last week has been chaotic to say the least. Between physio sessions and pain sessions (more like pain 24/7 with my only help being heatpacks) it's been hard to keep motivated and focused. It's also not helping that I'm seeing so many people leave who haven't been in all that long. Mind you, there's almost always someone to talk to.

Without getting in depth about the new disability services system taking, very slow, place throughout Australia I can say that the NDIS (National Disability Insurance Scheme) can be a minefield. Normal referral processes no longer work, certain organisations won't take you, and you have to get a plan review whenever your circumstances change. The last part has worked in our favour and the review was completed quickly and approved the same day. Not to mention our Plan Coordinator is awesome. She pushed everything through, has provided us with valuable information and fought to get equipment delivered before my expected discharge date. I'm so glad she's on our team.

The equipment is going to be delivered on Tuesday, ahead of me having weekend leave next week. She's gotten in touch with the builder about the renovations and he's apparently ordered what he needs. She also told us that if this renovation doesn't work to get a non-hospital OT to take a look and then apply to get that done. She's worked in disability all her life and seems to know everyone... and has the same feeling about my OT from the hospital (the OT rubs us all up the wrong way - probably because of her condescension when dealing with everyone).

Today has been good. We left the hospital around 11:00 and went to see a local production play adaptation of Sir Terry Pratchett's book Jingo. We both enjoyed it and we're happy to see my parents up on stage. Following that we had Thai food for dinner and are both being very loved by the dogs, who will probably be upset and confused when I head back in tomorrow afternoon. My mother even suggested that I audition for the role of Nessarose in a local production of Wicked. She's supposed to be in a wheelchair but becomes able to walk after a magic spell. Considering the auditions are in May the show won't be on until June/July so I've got time to get to walking- though probably only short distances. As you can tell I'm seriously thinking about it.

Anyway, one more week and this 3.5 month hospitalisation will be over. Yes!

[Kahlia1981]

Tomorrow will be one week since I left the hospital even though I wasn't formally discharged until Monday morning. We've had quite a lot to get used to... including our new equipment and having carers here with us. Mind you, the last week in hospital was weird too.

My first overnight leave went well but I couldn't shower on the Sunday morning without the equipment so I had to wait until I was back. Just using the toilet was a mission. Hubby took my old wheelie walker home after dropping me off so we didn't have to take everything home at once. On the Monday I was straight back into the physio gym and hospital life when we were advised that the new equipment was being delivered on the Tuesday. So I got overnight leave again for the Wednesday night and was able to test the shower the next morning. On the way back we got a phone call to say that one of the care team had decided they didn't want to drive out so we had to interview another three workers. Extra stress we really didn't need. Friday afternoon we made the decision on our new carer and put together some basic hours to start with, starting on the Monday.

Aside from a pointless appointment with the GP on Tuesday, and a phone call from the hospital on Monday we haven't had too much to deal with. Tomorrow morning we have a consultation with a rehabilitation group to set up appointment times and stuff like that. The weirdness of having workers here will probably take a few weeks for us to get used to it but it has relieved some of hubby's stress and made things easier.

Now I just want to sleep again, preferably without pain but I guess that's something I won't find until the damage in my spine removes all pain sensation (and movement)

[Kahlia1981]

Wow. I can't really believe how long it has been since I last updated this. At that point I was not home all that long, and now we're about four months since I was discharged. It's been ... interesting, that's for sure. So much has happened in this time, and is still continuing so I'll quickly summarize the important things.

Our bathroom renovations were completed around about a month after I cam home from hospital. It has definitely made a huge improvement in the situation in there, especially with the ease of mobilizing around. From the day after the modifications were done we began to notice water leaking out of the shower under the matting. Now we have had two different fixes tried (thankfully we didn't have to pay for that ourselves) but water is still leaking along the grout lines. Having said that, a couple of bath mats helps, as long as my workers/husband hang them out after each shower.

We've gotten in to a bit of a rhythm with my support workers now. Mostly we have one support worker, with a second one taking the other shifts. As they have had to move people around, and workers get sick or go on holiday we've had a couple of one-off shifts with other workers, but the agency ensures that we have already met them. Obviously if it's an emergency switch we could get someone that we don't know. Thankfully we have quite a large pool to choose from.

My main worker is brilliant. She does laundry, washes dishes, helps me put clothes away, cleans, vacuums, mops and does some cooking for us. She is a great cook by the way and always tries to make sure that we/I have something in the fridge that I can eat. Our other regular worker has been through a couple of different phases with us. Initially she was pretty good but, due to the lack of tasks to keep her busy, she began spending 99.99% of her time playing on her phone or making personal phone calls. I actually felt bad about asking for her help when I needed it because I felt like I was taking her away from something important. Anyway, we spoke to our main worker about what the other one was doing which included arriving late and not working the full time but not letting the main office know that she had arrived late or finished early. To be honest we just wanted to know what our rights were in this situation and how this went down in the agency. It kind of got blown out a bit because the manager rang me and asked me about it.

At this point there's one other thing about this worker that I should mention. She has been accused of being caught asleep on the job when looking after a child with "behaviours". For anyone wanting a translation on that in this particular sense the child must be watched at all times and the kitchen door must always remain locked. The person who made the accusation declared that the child got into the kitchen and hid food under the couch and the bed. My worker is denying it, and it just happened to occur right when the complaint from me came in. In order to not just throw it all at her at once they broke all the bits over the course of the last three weeks. We were freaking out about how she might take what we said, but she has definitely reeled in her phone use and hasn't lashed out at us.

I decided after seeing the p***k of a doctor that my husband was seeing and him treating me like c**p that I needed a new doctor. Given the large number of doctor surgeries in the city I went around getting suggestions from the people close to me. Eventually it was a referral from my main support worker that got me the GP I now see. My husband even moved over to see him as well after the old doctor refused to prescribe him quit smoking drugs after stating that he didn't see a problem with it.

Medically I'm off all pain relief except for my anti-inflammatory and managed that without too much stress. The only exception to that rule was a couple of weeks ago when he prescribed me something short-term to deal with a particular problem. Despite that fact that the problem still exists I haven't said anything because it never actually helped. To stop talking in ambiguous and vague terms the problem is simply this: The pain in my lower back is completely untreated. My shoulders, upper back and neck muscles are continuously contracting and knotting up in order to "protect" my lower back. I have frequent (almost constant these days) headaches and dizzy spells every time my neck moves. Brushing my hair is enough to set one of these dizzy spells off and nothing seems to help.

Currently we live in the granny flat on my parents property but my parents want to sell the property and take another around Australia trip in the RV while they are still young enough to enjoy it. We've been keeping an eye out for wheelchair accessible rental properties and, realistically, have only found one. Because it was the only one we checked it out and it definitely ticked a few boxes. It was a large house, built from the ground up for someone in a wheelchair, with three bedrooms, a study and what could be used as an extra sleeping place and a storage room. What we didn't like about it was the price. At over $300 per week in rent we knew that we would have to get someone in to live in one of the other bedrooms or there was no way that we could possibly cover the rent.

Considering that was the only wheelchair accessible place I changed my search string to wheelchair friendly and another place turned up. It's only two bedrooms and smaller but the bathroom is easy for me to navigate. At this point we need a ramp at the back door, and the one we are currently using on the inside of our "front" door will need to go with us. Getting me into the second bedroom (which we think is actually meant to be the master bedroom) is impossible whilst I'm in my wheelchair because of the sharp angles. So, we're looking at turning the second bedroom into a study and my step-daughters bedroom when she's up here because she only comes for like two weeks a year so having her own bedroom full time is just ridiculous.

In case you cannot tell we put in an application for the second property and, long story short, we are moving in on August 4th. Everything just kind of fell into place for us with that. We have special permission for the dogs to be inside, we have secure entry to the property with the only two options being a fob for the main gate and an alphanumeric code for the gate. Our dogs really won't know themselves with a proper garden to run around in. For me, I will be able to sit outside with everyone and interact with them (once the ramp is in place), I'll be able to see the dogs playing, and it also means that we can have the cactii in view as well... provided we can manage to get them all over to the new place.

Right now I'm getting close to the end of my fifth week of not smoking. Thanks to the medication I'm not feeling anything really in the way of cravings. My biggest issue right now is the habit side of things, especially when my workers smoke and so does my husband. Originally we were going to quit together but my husband had a really bad reaction to the medication. His aggression was becoming dangerous so we convinced him to take himself off it. Given that I'm still in the early phases of this I'm still surprised that I've actually really wanted a smoke only once... right after dealing with someone from the department of housing who was downright rude and condescending. Honestly though I think I wouldn't have been so tempted at that particular time if my husband hadn't lit up in the car. But, it's a learning experience.

Realistically that only leaves one more thing, my university study. After the hospital I decided that I needed a break during semester/term one and began searching for an appropriate university to undertake my IT course at. I settled on one, put in the application with all the extra pieces of paper and received a response really quickly. My husband decided to put his application in for the same university and course but his offer was a bit slower in coming. Next came the "fun" of submitting everything for credit transfer. The university we are attending basically makes the students do all the leg work for the credit application, including mapping the learning objectives. Hubby flipped over that and made the decision that he was going to withdraw. Just before the start of this term he changed his mind.

Last Thursday we had a very long full day at Orientation where we got free coffee and food. (Anyone who is/has been a student is reading that and silently going "Yes!!!".) This week saw the beginning of the term and we had classes on both Tuesday and Wednesday afternoons. After these my husband has decided to change his mind once again and withdraw. Don't get me wrong, I can understand why he would do it. One subject is communication which is extremely boring, and the other he has far too much pre-knowledge so even though it would be an easy pass (or HD) for him it's "not what he wants".

For now I'll leave things there because this post is getting too long for even me to keep track of what is happening. Hopefully things settle down into a rhythm soon but I won't hold my breath.

[Kahlia1981]

Well my year was turned around after a group presentation where I was the only group member doing the work.

I had a break down and ended up in the local private clinic for six weeks. We trialed TMS again and, strangely, this time it worked. Mind you, it has come on quite a bit since the trials I took part in. Now I'm floating and trying to pick up all the pieces. Everything at the clinic would have been better if the doctor I was given didn't try to completely re-diagnose every single condition I have regardless of whether it was psychiatric or physical. He didn't listen, made completely false and far fetched claims and seriously was a total pain in the arse - one of those psychiatrists who believe that a medication that previously failed will work because it is them administering it. Meh. He managed to sabotage the treatment that did work so I'm sitting here trying very hard not to SI or worse, and with no energy to keep fighting. I guess that's just what you get though right? *sigh*

On top of that, I had a problem with one of my shattered teeth and oral health wanted me to wait over a month for an emergency appointment so I got in touch with JCU Dental - a clinic where treatment is given by final year dentistry students. Expecting them just to rip out the damaged teeth I was pleasantly surprised when they did a proper assessment, then booked another three appointments where they took out the shattered teeth and started rebuilding the rest. Where oral health would have just ripped all my teeth out slowly they have put fillings in and are certain I can keep the few teeth I still have left. Early next year I will be able to get fitted for my dentures and by March I should be close to finished everything. Impressive.

I got my eyes tested and new glasses. These ones work much better for me as my eye sight has massively deteriorated. Maybe I didn't notice for so long because there was no reason to notice. Also, my wheelchair had a service and the push rims have been replaced. So I guess life just continues to go on... How I wish it would stop and allow me to rest but that just isn't it's way.

[Kahlia1981]

I'm really tired at the moment. Right now I think the depression is just removing all my energy and motivation but there's nothing I can really do about it. By rights I should probably be in hospital but my husband doesn't want me to go back there. He keeps lecturing me on becoming institutionalized.

Today I went to my singing group and was told that next Monday is the dress rehearsal. Since the person taking photographs will be there I'll need to organise my outfit, with no idea what I have that will be suitable. Oh well. I guess that I can work with my support worker this afternoon on sorting that out (so that I don't forget about it). Given that it's black and whites for the first half that should be too difficult to organise. Whether I want to wear something different for the solo in the second half or not is still an option available to me.

My right shoulder has been playing up for a few days now - probably closer to a week. The pain is becoming impossible to ignore but there's nothing to do about it right now. Just pushing my wheelchair is causing me issues, especially when facing large distances, oddly sloped roads/paths and bumps. I'm kind of hoping that it will soon settle down but it seems to be getting worse rather than better.

I need to organise an appointment with a psychiatrist at the private clinic in order to ensure I won't (ever) get the doctor I had while in there again. My hopes are that the doctor who did my TMS threshold will be prepared to take me on, but I won't know that until I ask her. Any doctor would have to be better from my point of view. Also, since I will be returning to the hospital every three to six months for TMS treatment, it does seem to make sense that a TMS doctor takes me on.

We've just arrived home from pre-voting before the election on Saturday morning. Our change of address has made our closest voting location not exactly the best option. The nearest school is listed as "assisted wheelchair access" and we didn't want to muck around trying to work out where we could get me in to the building. So much easier to park immediately in front of where we were going, which also was immediately in front of a ramp... Handy.

For now I'm going to have a bit of a rest...

[Kahlia1981]

As a really quick update; the concert went well and I was able to attend the break-up. I was actually incredibly happy about that because I landed in hospital two days before the break-up last year.

Hubby bought me a pedometer watch that counts my wheel strokes as steps (yay!) but more importantly I can wear while pushing my wheelchair without bits and pieces digging in to my wrist.

I've finished making the presents for my nieces and parents and have, just this morning, wrapped them along with my nephew's gift card. Yes, we did wrap the gift card. We kind of thought that he might feel a bit left out without something to unwrap. To be honest I was worried about the wrapping because the presents from my niece are the same, but different colours. My fear was that I'd get them confused but we used a ribbon of the matching colour on the presents to help me until I stick the cards on them.

Right now I'm making another dream catcher - this being my second but a much bigger piece than my last one. Through doing it I'm learning new skills, and keeping my hands busy, which is the important thing.

Keeping myself alive and getting short bursts of being without the almost constant negative thoughts that are plaguing me is becoming extremely challenging. My psychiatrist knows exactly how things stand, and he's also aware that I'm going to try for a TMS admission in January to get things back on track and prepare for my return to university. Thankfully he full understands the situation and is prepared to help where he can.

Speaking of university... I completed my form to basically wipe term 2 from everyone's memory today. Once approved the form withdraws me from the subjects without academic penalty and removes the financial liability so it's as if the term never happened. That's actually quite a relief because of the circumstances surrounding it. My disability adviser has been a godsend for things like that.

Physio is continuing and we have managed to achieve one of the goals I set for myself, to get into my in-laws pool. Having to sit on the sidelines when everyone was in the pool was incredibly depressing, but now I can - with some difficulty - get in. I have to admit that my left leg floating still freaks me out. (I should probably mention that it's a salt water pool which increases the amount of floating.) Being included does feel good though.

During this week we lost our NDIS plan coordinator who was so good to us and managed to get me equipment, renovations and wheelchair maintenance. She has left the organisation but her replacement is the person who first helped us to organise everything for the initial planning meeting. On the positive side, we already know her. But on the negative side, we've lost our little terrier. I should probably explain that.... When she was searching for equipment for us or organising a plan review or whatever she would attack it immediately and if someone stood in her way she'd attack like a little dog - grab hold and won't let go...

We're looking at hydrotherapy with regards to keeping strength in my right leg even when my pain is at its worst. There's also a hope that it might help my left leg but, to be honest, I don't know how much luck we're going to have there. Maybe I'm just pessimistic but the longer I go without sensation in the left leg the less I am able to believe it will just start working again. *sigh*

I cannot think of anything else at this point in time... so I'll say merry christmas to anyone who might see this.