Neurologist part 2

Due to my worsening eye sight and neurogical problems I had an emergency appointment to see my neurologist on Friday. 

Now last time I saw him, it did not go well. He was patronising, arrogant and refused to do anything until I had cut down my meds. 

So the thought of seeing him again wasn’t pleasent! But I tried to stay positive and was determined to be open and honest with him, to say I need help and if he wasn’t going to help then I would refer myself to someone else. 

Well, I have no idea why but this time he was absolutely lovely! It’s as though he had a personality transplant or an evil twin that saw me last time! 

He was very honest and I appreciated that. He wants to help, and has put in for me to have an MRI spinal scan and any tests I think I may need in the future. 

He said.. “I believe you are very unwell. That you have chronic fatigue, ME, a neurological disorder brought on by my nervous system, Fibromyalgia, Endometriosis. I can look at people and know if they’re ill or not, I look at you and know you’re very unwell. That your immune system, rheumatoid, nervous system, muscles, well, your whole inner system is in constant turmoil and has made you very unwell.” 

I was shocked and said I appreciate him saying that, and is there anything I can do or he can suggest that will help me? 

He was very straight forward and said, there’s no cure for what I have. They don’t understand it enough, why it happens or how it happens. He is going to refer me to the Bath Specialist Pain Hospital and hope to ease my chronic pain. There is too much wrong inside to ‘fix’ me, all they can do is try to make me as comfortable as they can and I need to think about my future. To have carers in place, someone there to help care for me. Not to do major housework, any work that makes me exhausted. To move so there are no stairs, to do anything that will put less pressure and worsening affects on my health. 

He can’t say I will ever get better, that I am getting worse and that could ease, I may feel better for awhile, and my body calm down. But he’s not going to give me false hope that this will happen. 

He asked me to come in and see him in a few months time to see how I am and if there’s anything I need that they can help me with. He even pushed me in my chair out of his office after the appointment! 

I left feeling relieved that he now believes me, that he was totally honest with me and although he can’t cure me he will help if I need it. 

So, that’s that for now. 

I have to accept I’m not getting better yet, or ever. That I need to seriously think about getting a carer soon, need to move and have a place big enough for total wheelchair access, and think of anything I have to stop doing to help my body not be put under too much strain. And things I can do to help. 

The worse thing is telling people. For myself, I accepted I am pretty unwell as I live it every day and my worsening symptoms and new issues are very obvious to me. I know this will upset loved ones, and for me that is the worst thing. 

I guess, we always think there’s something in medical science to fix us. We expect to go to a doctor/proffessional and have them give us pills or treatment that will cure us. 

Chronic illness doesn’t work like that. It’s so complex, so individual that they really don’t know enough about it to even know where to start to help it. 

All they can do is try to ease the symptoms, and as the neurologist said “make you and your life as comfortable as we can” 

He also said that I really need accept that bed rest means bed rest. Not getting up doing housework, cooking, washing etc and resting in bed in between. Bed rest means total rest, your body is telling you to stop, rest and if you don’t you will suffer harder and longer. 

Habits are hard to break though eh! But I will start being better at looking after myself, asking for help if I need it and start seriously looking for new housing and a carer. 

Yes it sucks, yes I’m not happy about it. I don’t want to be like this, live like this, face the next lord knows how many years left of my life living this half life of severe illness and better days. 

But what option do I have? If I don’t accept it I will slowly but surely become bitter, angry and live in hate that this has happened. Which will solve nothing and make it 100 times harder. 

I will have days when I’m upset, frustrated, angry because I’m unable to do things so simple a child could do it. Definetly days when I feel I’m letting people down because I can’t be there for them as I should be because my body won’t allow it. Times when my legs and limbs don’t work properly and are swollen due to muscle and body pain. Blindness and constant headaches because of neuro problems. Days when I feel totally isolated and I can hear people happy and enjoying life outside while I’m stuck in bed unable to walk or move properly or without massive pain. 

Acceptance may take time, but it’s still life no matter how restricted. I wake each day and no matter how unwell I am, I still wake. I get to see my loved ones, spend time with them. Speak with them over phone or internet. Be in their lives and enjoy each new day as best as I can. 

Many people don’t get to do that, and I am grateful that I can. My life is very different to most peoples, but it’s still life. I am lucky that I still get to experience it no matter what condition I am in. 

🙂 

Rising up

I have been away from my blog, social media and everything in my life in the last two weeks. I apologise for the absence, it wasn’t due to me being totally ignorant, I’m only partly that, but because of some personal upsets in my life and a very bad time with my illnesses.

I was extremely down, so unwell, worried over my new symptoms and what they could mean to others and my life,  over thinking, over doing, not sleeping, eating. The inevitable happened, I burned out emotionally , physically and mentally. I won’t lie and say the last two weeks have been easy, because they haven’t. I won’t pretend everything is ok, because they aren’t. But what I can say is, I’m feeling better than I was, I’m very much happier and I’m taking each day as it comes.

My pain clinic appointment on Monday went so well, better than I thought it would. My specialist knows and treats many people with fibromyalgia and it was a huge relief to talk with someone who not only understands the illness but who is willing to help. She changed my Gabapentin for another Neuro/pain drug and a new pain drug to start in two weeks time. This drug she had only given to four people, it’s new a year old and she only gives it in extreme cases. Mine fit the criteria, she confirmed I have severe fibro and had a real understanding of how it affects not only someone’s body, but whole life. I had a ‘pain wash’ come over me while I was awaiting my appointment and they sorted a fan, opened the windows and were so nice! I was totally embarrassed though, I sweat profusely during these episodes and it lasted half an hour, all through my time with the specialist. I think it helped her to decide to give me the painkiller, but wow I wanted to be anywhere but that room, sat in agony, sweating, shaking, retching, and unable to stretch in my wheelchair. I guess it showed how bad it is, I have the pain engulfing episodes many many times everyday and night, but darn this illness and it’s  lack of etiquette, timing and full embarrassment!

I have had real problems with my home move. They put me in the lowest bracket, which means no disabled access, but high rise flats. Not only that but they have put me down as a house exchange.. I only phoned them Tuesday to sort it out and they said they had lost my forms but would sort it. Saturday a letter came outlining the lowest band etc.. To say I am not impressed is an understatement I am livid. I am so tired of having to constantly sort things out that I shouldn’t have to, and which lowers my energy levels, makes me unwell and is a constant cycle. I will phone them later this morning, when I have two hours to take out of my day last week I was on the phone for nearly three hours.. Grrrrr

Good news is I have my rheumatoligist appointment today, late this afternoon. I am really hoping that this will be a huge help in not only diagnosing anything else I may have but be given help to make my symptoms easier. They have my results from my a&e rheumatoid tests, I had to phone the hospital to sort that. But at least it is sorted and I am hopeful that today will be a step in the right direction. 🙂

OT visit and house move

So my OT turned out to be so nice and helpful! She understood and M.E and Fibro which was brilliant, so many ‘professionals’ don’t and I feel extremely lucky to have an OT who not only understands what the conditions are but also how they affect you. She said I have it severely don’t I and then went into how my home is unsuitable for not only my conditions but my mental health due to living upstairs, the flat being no way adaptable for a wheelchair and being housebound. She said I need to be moved, somewhere that is open planned, big enough to cater to my wheelchair and somewhere with a front or back garden so at least I can get into either in my chair and not be trapped inside 24/7. So I agreed and she is writing her report and sorting the paper work out and in six weeks I can begin bidding on propertys on the home choice website. I knew in my heart I would have to move, the stairs alone have caused many a fall since becoming unwell and it isn’t suitable anymore. But haven lived here for so long it will be a wrench to leave. It could take up to a year to find a suitable property so it’s not right now, but the ball is rolling. The biggest wrench of all is that my son is going to stay here and take the tenancy fully over. I knew this could be a possibility and fully understand him wanting to do so. I support his decision, I will not stand in the way of it. He is 19 going on 20 at the end of the year and he has been talking about moving/ having  his own place for a lil while. So me signing over the home he grew up in is a better way of doing things as it will be fully furnished and he already pays rent etc.. He knows everyone in the area and his uncle lives across the road. It’s an area he was brought up in and he feels secure here. Plus I will be moving as close to my parents as possible and probably have a cater come help me so he doesn’t have to worry about me. He has his own life to lead and I will never stop that or make it difficult. He is mature enough, very capable and I know he will be fine. He’s had to cope with a lot more with me being so unwell for so long. Yes it will be hard to not be living with him but everything changes and this is just another situation that I will adapt to. I have never tried to tie him to my apron strings or would make him feel he can’t lead his own life the way he chooses. He will be very close to hand and we will never lose the closeness we have. It’s usually the child that moves out, it’s the total opposite with me going but I have never done things by the book so hey, it’s not unusual in my pattern of life. It will take six weeks for all the paper work to go through and in that time I can adapt to the thought of it all. It’s a huge life change, but one that is needed so with that in mind I will come to terms with it eventually. I must be honest and say these viruses on top of my other conditions have really knocked me and my body. I am hardly sleeping, my body is in more pain and the stiffness in my joints are very very bad. I have been sick several times purely due to temperature and pain. I feel wiped out and exhausted by all of it, I thought I would feel better after a few days but I didn’t take into account that any virus makes everything 100 times worse, but now it’s literally painfully obvious. I am doing as little as possible, but even that isn’t helping as the symptoms are swirling away inside me making even laying down uncomfortable and my body throb with aches. I will keep on top of all my meds, my antiabiotics and continue to drink lots to help me not to choke. I need to phone my local council so I will have to do that today, but anything else is a no go. Hopefully tomorrow I will wake feeling better, and can start doing the paperwork needed for the home move.. Hopefully, maybe, fingers crossed! 🙂

Downstairs

Yesterday I completed a task I had set myself, to sit in the living room for an hour. I was and am still ridiculously pleased I managed to do this as I not only sat and shared a very good hour chatting with my son and watching wrestling, I managed to get down the stairs of death! Ok, that may be a bit over exgageratted but they are a big obstacle for me and one I battle with daily. I never thought of them that way when I moved in, I was 17 and full of energy and although they were steep it never crossed my mind that one day I would have to battle daily with them. They are the main reason I know I am going to have to move home sooner rather than later. Plus the fact I know I need to live in a single story home which will greatly improve my ability to get around and have no fear of falling down as I have on several occassions. It will be hard to move, I have been here 16 years, I brought my son up here, it’s full of memories and happiness. And although the area isn’t great, I’ve always been able to come home, shut my door and have total privacy from the outside, something I relish. But moving at the moment is something I can’t even think about clearly until I am slightly better, the stress and energy needed is just going to make things escalate. So for now it’s a thought that is there in my head but not in process at the moment.

Being able to sit downstairs, plumped up with my orpthopedic cushion and sofa cushions was lovely though. The pain cut in within twenty minutes, and by the time the hour was up I was in a lot of pain and spasming but could no longer feel my legs, until I was helped off the sofa then the pain cut in. Boy did it cut in! But I am determined to spend up to an hour on better days sitting downstairs as it can get very isolating being on your own in bed most of the day. And I want to spend time with my son, talking, watching a programme or just sat together doing our own thing but still im present.I love my peace and time alone and I think that has really helped with my being mostly bed and housebound. It has made the process easier than some one who needs to be around people a lot. I have never been like that, from a young age I spent alot of time alone and enjoyed it. But I do get days when cabin fever sets in and I yearn to be outside, to do simple things such as going to the shops or sitting in the park with a book and feeling the sun on my skin. I haven’t been able to go out in my wheelchair as I haven’t been well enough to, the last trip made me relapse for days.

It’s not until something is taken from you that you realise how important it was to you. My choice of going out when I want, as far as I want and for as long as I want is no longer an option. I can manage an hour tops in my wheelchair then I need to get home before my limbs totally freeze and pain doubles me over. But on the flip side I am getting used to being at home. There is a sense of drifting through the days and them all rolling into one that is in a strange way very peaceful. I have no deadlines, no having to rush from one place to another at a set time, no huge demands put upon me. I spent my whole life living that way, even from school age we are put on deadlines, play times, work, meal times. Its all time set. My specialist said that it is a very odd fact but people who end up having chronic conditions are the usually people who have always been busy, worked hard, had high stress and daily demands. Its as though we are at high alert stage and instead of the body calming down relaxing, resting after a flu, event, life style calms down, chronic illness has kicked in and kept us and our bodies at high alert and they are stuck there. I found that a very good way of describing chronic illness, and do so when someone asks about it.

I am not saying I wouldn’t stop being this way and live as I used to if I had a choice. I would swap in an instant. But when you become house bound I think you have to accept that you are going to be living like this for a while, or for ever depending on your illness. Acceptance I feel makes it easier to live this way. I accept I am living this way at the moment. I am hoping things will change in the future, but for now and the near future I know this is my world, my home and it is easier to face when you accept it. Acceptance is the key, and the key to not driving you made being at home day after day, week after week, month after month, year after year. I know I can’t change my situation at the moment so I am choosing to embrace it and if things get better that’s great. But if they don’t, well, I think my acceptance will make my life living constantly inside at home a whole lot easier to handle.