I’ve had bad nights sleep and here I am awake at 3am. I’m feeling grotty and then my head fills with emotion and questions and then the tears start. Suddenly I realize what is wrong…..
Yesterday I went out on a day trip to Chatsworth House. Having looked round the house and grounds we stopped to settle for a drink and sandwich from one of the many cafes on site. I was with a group of gluten eaters who were all able to settle down and eat something. Looking at the salads available they were dressed with various dressings mostly dairy based so out of the question for me. The sandwiches were wheat based, the snacks sugar induced. This aspect of the day trip further elevating the bane of having so many stupid and annoying food intolerances. No wheat, no gluten, no dairy, no soya and no sugar!!!!!
For the first time in a long time, I really felt out of place. As I watched the others eat their meals, drink their soft drinks or coffee or tea I found myself feeling quite a lone in a group of people. (This feeling of being alone wasn’t due to the way the group made me feel, instead it was down to my feelings and reaction to the situation I found myself in.)
Now when I think about it, I think I’ve felt like this for quite a while. Alone I mean… In a world full of people who can eat almost anything, it can be hard for the many individuals that don’t have that ability. I used to be able to tolerate pretty much any food. I never had any major issues until 6 or so years ago. Now though, I find myself fearful of food and some drinks. How sad does that sound?
I find that most of my day is made up of thinking about being unable to eat food. So whilst sat I found myself looking at the floor or playing with my bottle of water. I do this a lot now when I’m in an environment where I can’t control my food. I didn’t want anyone feeling sorry for me and after being offered a bite of everyone’s sandwich (most comments combined with you can eat this, it has vegetables in it.) (Don’t get me wrong, they meant well and it’s just that they weren’t aware of what eating gluten and wheat free meant so I let them off.) J
So at times like this, I look down at the ground and I can’t help but feel sorry for myself and all that I’m ever thinking at this point is…. I can’t wait to get home and sort myself out some suitable food that I can eat. Something that won’t debilitate me and ruin the rest of my day. I’m not a moaner or negative person at heart so when I hit that point, you know it’s me having a very bad day.
I recently realized that I haven’t eaten in the afternoon, at lunchtime for months. My fear is of how the food will make my body react and how the rest of my day will then pan out. You see first thing in the morning, I can tolerate my toast so I have that. (I used to have smoothies made with berries, but now I’m scared of making and drinking it cause it makes my body swell up.) Eating food at lunch I started to notice a pattern whereby I’d start feeling ill and the neuropathic pain in my body would get worse. This meant I spent the rest of the day thinking and feeling the pain and beating myself up. The day would continue with fear and general unhappiness, joined with the fact that I was nowhere near my bed where I could lie and rest under my duvet so that I could just take it easy and not have to move. If I was at my desk at lunch then coping became difficult as the neuropathic pain took over all the feeling in my body. Silent tears would enter my eyes that I’d have to wipe away in secret and I did not like that, so no lunch became my unorthodox motto. Don’t get me wrong, I didn’t want this to be the case, but if eating lunch at work made you unable to carry out your job as you should, then why do it? Now oddly enough I am yet to find the perfect meal at this time of the day that won’t affect me. I’ve tried more toast but I hate lack of variety in my diet so I opt out and mostly due to my food limits, the option I have planned for the evening meal during my rest time, would mean lack of variety if I had it at lunch. Plus there are many things that I take some chances with in my evening meals such as tomatoes (which I use in my sauces) that would mean if I had it at lunch, I’d be sure to feel unwell. Sad but true and fact is fact I can cope with it at home as I’m in my home and there I feel my most safe as I can then relax and take time out to A) deal with the reaction which is mostly neuropathic pain, tiredness, lathery and bloating and B) Go to bed and rest up for the 4 to 6 hours that I know I will sleep which will in turn provide me with the ability to get up and start my new day the day after.
When I’m invited out for a meal, at first I’m full of joy and then reality sets in, I’m full of dread and fear with what will I eat, how will I feel? All running through my mind. I use gabapentin for neuropathic pain and all I can think is how much I hate the fact that I’ll more than likely have to take more than my daily quota to get me through the meal out. Then there’s the how on earth I will feel once I’m home after being out. Normally it’s straight to bed. I mean I can’t plan a typical night out. For example a meal and a few drinks. This is because normally if I eat out, something will trigger the nerve pains I suffer from and all hell breaks loose in my body. Or if I’m going out, the many hours prior in that day can’t be food induced. Now when I say food induced, I mean breakfast is ok but no lunch because of how I may feel which in turn could mean the inability to go out.
Another sad thing I’ve noticed is that so much of my time now is spent in my bed. Mostly because I’ve eaten and when I say I’ve eaten, this is just a meal that any other person would take for granted. Unlike once upon a time, my meals are not extravagant or full of variety. I eat what I eat pretty much every day. The same old foods with not much difference in them. The thought of trying new foods fill me with fear and dread. I’m fascinated at the fact that food makes me feel this way. I’m even more fascinated that so many other people feel the same way and not many medical or health professionals acknowledge or realize this. I mean I know for a fact that I’m lacking in so many of my essential vitamins and minerals (due to a lack of diverse foods) but what do I do? Where can I seek help and advice? As much as you may be able to help others and give information and advice, sometimes you just want someone to help you and guide you. I’m looking for that now but sadly, most of that help is coming from reading information on the web, others experiences, blogs and discussions then just putting it all together and trying to come up with your own answers. Like anyone else, I too want help and information from someone like a specialist. I guess more than anything, I would love it if someone would acknowledge how this affects both myself and so many individuals all around the world. How sad to say that the food I need so badly in my life, that gives me energy and life can also bring such fear and negativity into my life.
Writing this and bringing these thoughts out into the open is filling me with pure WANT. A want to make a change and stop myself and others having to go through these thoughts and feelings. I’m not quite sure how, but I’ll keep thinking and I know that the answers will come to me. I’d love to hear from others too ….
- Who have similar feelings about food?
- How do you cope?
- What help have you received?
- Where do you seek help and advice?
- What do you think would help you if it existed?