Hi Efuryone its me Harry
Boss has asked if she can hi-jack my blog again today. So I has given her pawmission upon payment of a gravy bone and will now hand ofur to her while I go and has a snooze…………………
Hi everyone its me the boss also know as Heather
I wrote a blog in April this year explaining about my illness and how Harry has helped me through from day one and how our relationship has been the most amazing I have ever had with a dog. He truly is my rock. Anyway, as most of you know I have been having all sorts of tests of late and Harry, in only the way Harry can be, has been keeping you all pupdated, his word not mine, with whats been happening and if my brain truly is half dog. I have SLE Lupus, ITP and now I have significant impairment (consultants words not mine I am still trying to work out what the significant bit is) of my frontal lobe (memory, tracking) which is currently under investigation.
Firstly, I wanted to say thanks for all the kind words of support we have received often from people who are battling illnesses themselves on a daily basis. I have also had messages of concern as to why Harry is not around as much as he used to be which is one of the things that has prompted me to write this blog. Another reason for writing is that I have so many friends that sometimes don’t know how best to help me or support me or sometimes wires get crossed. Now don’t get me wrong it’s not their fault at all it is just well lets say my brain does not quite function as it once did! I think half the problem is I look well and cover things too well and having spent this morning totally overwhelmed by lots of things and in tears and having my boy Harry come over and sit with me head on my lap licking away my tears I thought to myself I came up with a plan. Write it down, take your time and explain as best you can to everyone at once what it is like to be me. So here we go I hope I don’t bore you too much and for those of you who needed and asked for this over the last months sorry it took me so long!
A typical day
A typical day for me is this………
- Wake up early probably only having had on average 4 hours sleep.
- Catch up on a few things like Twitter and FB but generally I will have been doing that through the night.
- Try to remember what I did the night or day before. Now I don’t mean that I forget totally I have some memories there they are just in a kind of jumbled up mess. I also have the added issue of not remembering feelings. I know something was fun or sad or exciting its just my body and heart and head has forgotten. I sometimes try to do those fun things again so I get that feeling back but that is not always possible and that makes me sad. I find that I am at my quietest sometimes in the morning because the sadness is overwhelming of having lost valuable important life experiences that I will never get back. Its a real shit. (sorry for swearing)
- Sometimes I may seem angry or moody in the mornings too. Again that is me being totally cheesed of because by now my brain is working overtime trying and trying to see if I can just once get that feeling and memory back of even just someone holding my hand. It never does.
- Once I have dragged my sorry backside out of bed having had the obligatory cuddles from Harry who asks no questions, does not wonder why I am in a sad mood, crying or a bit quiet I have a shower. Showering used to be an interesting experience for me for a number of reasons. Firstly, did I wash my hair. I kid you not I must have had the cleanest hair in the world. Did I use conditioner. Again the softest hair in the world. Did I really just use shampoo to wash myself. And on and on and on. Its exhausting. I have now put things in place to stop this cycle. However, sometimes I lose total track of time and end up a bit wrinkly. Another reason I no longer have baths.
- So get dressed that’s easy enough I tend to stick to fairly the same things these days boring but less stressful.
- Take my pills. Oh yes I take tablets have done for 2 years 5 months but do I remember oh nooooooooo. Now someone said to me recently “you have taken tablets everyday for over two years how do you forget to take them” simple answer, I have no recollection of taking them the day before. Scary! So taking tablets everyday is almost like a new experience for me. Why not put hem in a pill box each week marked with the days I hear you cry. Because I would need to remember that I take tablets and then I would need to remember that I need to check the box for the days of the week. Even if they are on the side next to me my brain does not register. Very bizarre. Guess what…… *runs off to take tablets*
- Now leaving the house takes a while and often than not I end up driving home once because I have forgotten something. On Wednesdays is our bin day I am responsible (stop sniggering) for taking the bins to the end of the drive. Yep you got it the bins have been to work with me on numerous occasions. EVEN if I have them on the back seat.
- We will skip work but I will say even though I am self employed I have the most amazing support from the people I work for.
- Get home and catch up with the family and how their day has been. Have some food walk the Harry and his furblings and settle down for the evening. Now most of you will watch TV I don’t well not all the time. I find it difficult to follow programs. Sometimes I need a program explaining to me even if its a series because I have no recollection of the characters, plot or story-line. I get frustrated and upset and pissed off with myself it is infuriating and again exhausting.
- Then off to bed with Harry and Maggie in tow for my 3-4 hours sleep and wake up and do it all again.
Talking it through
Talking is good. Yes talking is very good I used to be a great talker. I would want to discuss everything to death. These days my brain struggles a bit. It’s not an excuse for not wanting to talk about things I just sometimes can’t. My last session with my consultant was about trying to verbalise things again. Stupidly I forgot to tell anyone. Telling people may have helped recently if people knew I struggled with that and when I look like I am going to say something important or inspiring or deep or stupid I don’t, not because I don’t want to but because my brain does not send the message to my gob. I get embarrassed by that part a lot. so to the person who experienced that recently sorry you know who you are.
So, I write things down like doing this blog. Ok, so it has taken me 5 hours to do so far but at least I am doing it.
- I struggle to find words sometimes. If I am struggling chip in it helps
- I sometimes forget to feed Harry. He is so good as he waits ages before starting to chew my leg because he is hungry!
- Harry knows me so well that he very often still tells me if my platelets are low or if I am not quite myself. He will be like a shadow around me and will be soft and gentle with me.
- Harry keeps me sane in a way. He is so mischievous he does all the things I would love to do like jumping in the pond. Sometimes I just roll around on the grass with him and yes it is great fun.
- Harry gives me the ability to be “me” again. He does not ask questions or make demands or say “oh I do that” he accepts me for who I now am. He has not had to learn to adapt or “get his head round it” he has just gone with it treating me with the same love and respect. Aren’t dogs truly amazing.
Why oh why did you plan Woofstock UK?
Now there is a question! I sometimes ask myself the same question. As if life was not complicated and busy enough I go and plan a massive festival for dogs 117 miles away from where I live and pour every penny I have into it knowing it’s a huge risk. Simple answer, I love dogs, I love my dogs and I want to thank all the dogs out there for being the most amazing creatures on this earth. Sad answer, I don’t know what I will be like this time next year. I could be the same I could be worse I know I won’t be better. My memory and ability to do things could get progressively worse. Hey, when your consultant says he is astounded that I am still working and I have a significant disability you kind of think to yourself wow that serious? Then you do what I do and forget that moment and how it felt and how scared you were. It’s a blessing and a curse. So I want to make an impact and do something crazy and amazing, meaningful and important just once. I may do it twice or three times or four times but if I am to do it just once then Woofstock UK is it. A legacy to honour my best friend Harry and all he has done for me. To give people an opportunity to come together and meet new friends, old friends and people they have never met but have tweeted with and face booked with for years. I want to look back for as long as I can and say “I did that, we did that”
So there you have it folks. Sorry for pouring my heart out to you all but it felt like the right time. Woofstock UK is close and I look forward to seeing you all there. Come find me and Harry. Don’t be shy and give us both a hug. It would also be great if you could help me promote Woofstock UK so we can raise loads of money for the charities. If you are interested in helping then email firstname.lastname@example.org we would love to hear from you. If you just want to know more about it go here www.woofstockuk.co.uk
Stay safe, Harry sends his wuv and I send you mine too.
The Boss xxxx (AKA Heather amongst other things)