I really wish I could say that things stayed happy and positive but they didn't things finally got on top of me and I ended up being in a very bad head space today.
As I said in the previous diary entry on Tuesday I had a bit of a rough day well the rough day's continued yesterday and today, with today being worst day so far. On Tuesday I was just having Crohn's related problems but on Wednesday my bladder and kidneys decided that they were going to join in too and today I had a parcial obstruction. I have absolutely know idea how I even got this parical blockage because I can't eat solid food due to the oesophageal stricture's being to narrow.
After having 3 days full of problems I had a mini meltdown and just wanted to give up. I am sick of being in pain, I am sick of feeling sick, I am sick of not being able to eat properly, I am sick of being dehydrated, I am sick of fighting with health care professionals to get treatment, I am just sick of everything. When am I going to feel better, when will I be able to live the life that I want.
Previous post - Tuesday 23rd September
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So today has been a bit of a rough day as I have had sickness and pain on and off all day but despite that I have felt really positive.
I think my positivity is due to having such a good week last week, I honestly haven't had such a good week in a long time. The Crohn's and dysphagia didn't cause to many problems, I didn't feel that depressed, I was able to go out of the house for the first time in 5 months and I have finally managed to get my sleeping pattern back to normal.
I really do hope that this positive mood will last and that this week will be as good as last week.
Previous post - Thursday 18th September
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Today was a good day because....... I went out of the house! I went of the house!! I went out of the house!!!
I think it has been over 5 months since I was last out in a public place, granted it was only for 10 minutes and the place that I went to was really quiet but it's better then not going out at all. On Wednesday I planned to go and vote at the village public hall the following day, by Thursday morning I had changed my mind and decided that I wasn't going but in the late afternoon something changed and I thought screw it I am going to go. So I shoved on some clothes and went out with no makeup on because I thought by the time I have put on makeup I will probably chicken out again. As I was going out of the house I felt like I was in this small bubble, my heart was racing and I started to sweat so bad, I just kept telling myself in my head that everything was going to be fine, nothing was going to happen and of course in the end everything was fine.
I have been thinking about what my next goal should be and I think it should be the village shop. The village shop isn't that much further away from my house then the public hall but it will be busier. There is one other place that I really want to go and that is the beach because I desperately want to try out that new zoom lens that I for my camera a few weeks back but I don't know if it is a good idea just yet because the beach is 10 minutes away from my house.
Previous post - Saturday 13th September
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This week didn't really get off to the best of starts because the oesophageal stricture's of course wanted to play havoc once again. On Sunday when I last wrote I was able to drink small sips but the stricture's closed up again completely and then on Thursday it mysteriously opened up. When I woke up on Thursday morning I had to bring up the saliva that didn't go down during the night and I couldn't drink, but by night time I was able to drink and just not the small sips either large sips was going down. These stricture's make absolutely no sense at all, once stricture's are narrowed the only way to get the open again is by dilation, they don't open by themselves.
So I finally cooked this week. (Cooking and baking are some of my favourite hobbies but it has been a long time since last I did any cooking because it makes me upset as I can't eat the finished thing) It felt really good doing something that I love, despite not being able to eat it. I was orginally going to cook Sichuan-style pork & green bean stir-fry for the family but I could not find any Sichuan pepper where I live. Thankfully I did mange to find another recipe, Black Bean Pork with Noodles that used most of ingredients that I bought for the stir-fry.
I honestly cannot wait to cook again so much so that I have already decided on what I want to cook next, Lemon Parmesan Pasta with Chicken which is a recipe that I found on pinterest. I really want to start baking again as well but I really need to buy myself a food mixer because I certainly do not have the strength to use a hand held mixer anymore.
Previous post - Sunday 7th September
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So finally some good things have happened this week. Good thing number one is I am finally able to drink small sips which means my oesophagus had become irradiated and swollen shut so fingers crossed in a few more days it will be back to normal, well normal for me.
Good thing number 2 is I have finally got an appointment with an occupational therapist on Tuesday the 30th of September. An occupational therapist is suppose to help me with my anxiety problems and I have had a few people say that seeing an occupational therapist really helped them with their anxiety issues.
This weekend I was finally in the mood to started cooking again. Cooking and baking are some of my favourite hobbies but it has been a long time since last I did any cooking because it makes me upset asI can't eat the finished thing but now my appetite has finally disappeared I can be around food now again. So as I said I had planned to cook but I couldn't find all the ingredients that the recipe needed. :( There is a couple of more places that I can try but if I can't find them there I will just have to make something else.
Previous post - Thursday 4th September
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Sorry that there has not been any blog posts for a little while but I have been dealing with a with problems.
So these last couple weeks my oesophagus has been playing silly buggers with me. Last week it seemed to open up a bit so I decided to give some very watered down pureed food (it was more like soup really) a try which went down no problem. After doing this for a couple days my oesophagus and throat started to be come raw and sore which I couldn't really understand because the stuff that I was making was of a soup like consistency so how could it be irritating the oesophagus.
By Sunday it was really bad and then on Monday morning when I tried to drink nothing would go down at all, even saliva wouldn't go down. I really do hate when that happens because a) I can't speak to anybody because speaking causes me to make more saliva so I start choking, b) having to bring up horrible thick saliva is bloody disgusting and c) due to becoming badly dehydrated I feel like I am living in a fuzzy, spaced out world.
I am really hoping that this is just a hiccup and that it has just become swollen due to being irritated. Over the past 3 years I have learnt that sometimes it just swells shut because something has irritated and after a week or so the swelling goes down enough for me to be able to drink again.
Previous post - Saturday 2nd August
I have really been struggling since last weekend not only physically but mentally too.
Last weekend I ended up having an ostomy output that I have never had before, it had this weird ground coffee look which of course sent me into a panic because if you bring up ground coffee vomit it normally means there is blood in the vomit. Thankfully I had some trusted Crohn's friends that I could ask about his problem and they reassured me that the output was not necessarily blood.
As I was talking to them we got onto the subject of my oesophageal stricture's and how I was being treated and lets just say I have been thinking about that conversation at great length since last weekend. They are right with what they were saying I should get a second opinion about my stricture's, my consultant has been saying these past few years that nothing can be done with them but that is just his opinion. I have asked a couple of times now to be referred to a upper GI surgeon at my local hospital but he has never done the referral, I don't honestly know why he does not do the referral because a) it would stop me annoying him about it and b) the law says that everybody has a right to a 2nd opinion. Last year asked my GP if he could do a referral to a consultant in Oxford because there is a really good doctor who works at that hospital but according to my GP he cannot do an out of area referral. This whole situation is a complete nightmare no wonder I suffer from depression and guess what the mental health experts said, they cannot help me with my depression because it is related to my physical health.
It is time for change, I cannot keep living this way. I am 26 years old I should be out enjoying myself not stuck in this house 24/7, I need to get my fighting spirit back, I am not my illness.
Previous post - Thursday 24th July
