From Then until Today....

I was released from Rehabilitation on the 10^th May and and returned home to a very different life. Certain things I could now manage, I used a shower chair and that solved that problem. I also discovered that the shower chair was the right height to be able to sit a the kitchen bench and cook dinner. I could dress myself and move around slowly but I was and still am frustrated with the things I cannot do. Nothing more frustrating sitting on the couch looking at chores that need to be done and you want to do that you just can't. I needed to try and get as much normality back in my life as possible so under doctors instructions I returned to work the following week on the promise I would not work more than 3 days a week, which I still do. Prior to my illness I worked full time to support me and the boys. While I was in hospital Michael had made the boys get into their morning routine, even get their own lunches ready in preparation for my return home to make my life easier. I try to cope the best with the pain, fatigue and other symptoms the best I can and the first outing I had with the Brunswick Heads coop to have mothers day lunch with the family. I felt like I was back in the land of the living yet it was very different. I have constant pain and discomfort and symptoms aplenty from the illness itself, fatigue a major factor at the moment also. By early evening I am exhausted and go to bed on school nights with the children but am usually awake then getting uncomfortable in bed by 10-11 and have a couple of awake hours sometimes where my mind just wanders from thought to thought. A couple of times it was suggested to me by friends that they should do a fundraiser to help me out with things I needed. Having always been a self sufficient person who has always worked I said no until one day I was caught in a weak moment and agreed. My neighbour Celeste began the process and within a matter of days had overwhelming support from this amazing community I live it. People were ordering chocolates to sell and bookings were being made for a Mufti Bowls Day at our local bowling club. See her main aim is due to the fact that I can't regulate my body temperature due to the damaged nerves within the body and the sensory loss I am struggling to stay comfortable on dreadful hot days and this just enhances all the other symptoms. They are aiming to raise funds to install an air conditioner to help me cope. With the help of a few other ladies and my other neighbour Tracey raffles were being organised I have spent a few days at home emotional and overwhelmed completely at their efforts and the support the community is showing. I know that I lived in a great place but when this town needs to jump into action to support one of its own, boy! So on Sunday the 28^th October is Leah's Mufti Bowls Day and I am not quite sure how I will get through it. I hope I can keep my emotions under control that day. Last night as I told the three boys it was bedtime the usual routine began and I made my way to my room, one brings in my laptop, one boils the kettle and makes my cup of tea all without a request from me. They tuck me in and turn out my light and as they all head to their bedrooms they call out from all angles “I love you mum, goodnight” and I reply. I tear up most nights, my children now tuck me in and they are so amazingly caring and loving toward me. I am blessed to have them and I don't know what my life would be without them. That is our weekday night routine. Today I had an appointment I have waited 6 months for and it was at the Chronic Pain Clinic in Lismore an experience I wasn't looking forward to but I feel like I have some more hope tonight. They were fantastic and so understanding and helpful. They are changing the way and times I take some of meds to regulate the pain, switching some that make me sick and adding some to enhance and works with the others. At current I take up to 16 tablets a day and I was still in pain?????????? Transverse Myelitis they say, that is what it does. But...this doctor said we can try to help with this new plan of attack. On Thursday I see My Neurologist back at Gold Coast Southport hospital for my 6 month check up and I will know more about their plan of attack. I am hoping by the end of the week I will have some new information to work with. The one thing that is worrying and concerning me is that my physiotherapist has told me that there is probably no point continuing outpatient therapy as they have achieved their goals and really it is up to how far the spinal cord will heal now as to how much more improvement if any I will get. I at first took it as though “Oh no this is it I am not going to get any better” but no that is not right I will fight on and continue the physiotherapist routine I just need to stay strong and do it on my own at home now. So with the generosity and love and support flowing around me I am feeling truly blessed to be part of a community that so genuinely cares about me. I am looking forward to Sunday and can't wait to catch up with a few people I have not seen for a long time, some since before I got sick. Thank you Mullumbimby, Thank you. I will continue after seeing my Neurologist on Thursday.