Hi everyone, hope you are all keeping as well as possible.
I was brainstorming and came up with a post which could be seen as quite personal, but then again I guess the aim of my blog is for exposure and awareness of a personal story with this illness! I am going to note down the things I personally feel being in chronic pain has done/does to me on a daily basis. Some of these things may affect others, some may not, we are all different after all. I'd be really intrigued to know if any of the below do affect others too so please get in touch and let me know!
Anyone who has ever experienced pain regarding their pain scale or threshold I hope will be able to relate to this post. At one point we have all felt so vulnerable and exhausted by a physical pain that we don't quite know what to do with ourselves. Its often where we just want the pain to go away and shut ourselves away from the world, curl up in a ball and let time pass until we feel better.
Overall, EDS & POTS usually affects everything from my, organs to my skin, bones, joints, muscles and more. With other issues such as sickness, digestion problems, slow motility, fainting, migraines, dislocations and more. I wanted to write about how this lifestyle affects me when all of those things are combined on a daily basis. Everyone with these illnesses will know just how many aspects of the body can be affected.
I am going to try and split this into two sections. The first half being, what pain does to me physically and the second being what pain does to me mentally. Although at times some of these may overlap!
The ways in which I find pain affects me physically are;
Loss of body control - Often when my pain is so high, I feel a loss of control. I often don't feel like I have any control whatsoever over my symptoms or pain. My body throbs from head to toe from my limbs to my organs and skin. It's almost as if the EDS gene has a mind of it's own. My bladder, bowels stomach and heart never seem to co operate or ease and my joints pop out left, right and centre. This therefore leaves me in bed for days on end and feeling pretty helpless and distressed. It isn't pleasant feeling like there's nothing you can do to ease a pain or problem. It's also equally frustrating being so young yet feeling like you are the owner of a body of a 90 year old!
Unable to complete simple tasks - I find it extremely difficult most days to have a shower at a decent time. As if my pain is in control of me and dictates when something is do able. This makes me so annoyed as I know many people take being able to do things so simple for granted. I know I for sure did back in the day! I sometimes cant even manage to brush my own hair and put it up because of my fingers, shoulder or wrist dislocations (ironic considering I was once training to be a hairdresser as a profession). I take ages to get dressed, which is an even bigger problem when going out somewhere or when I'm on a tight schedule. Household things like, holding a milk bottle, kettle, pan are a challenge. As well as walking up the stairs, opening nail varnish or brushing my teeth. People often wouldn't over think these tasks but they can leave me feeling like I have broken a bone. The most annoying thing is that those tasks are SO SIMPLE! I get more frustrated with my self or shall I say my body for not being able to complete them and having to ask for help. I will always still try to achieve these things myself.
Stops a typical quality of life/ living a life - No matter how hard I may try, my quality of life with EDS is extremely poor. Personally I can never plan anything because I never know how I will be one hour to the next as I'm sure many people may also be with EDS. When something is planned, I feel extremely worried that I will be letting someone down because of how unpredictable a symptom or dislocation can be. To be honest, being in so much pain makes me reluctant to even want to go out, because it can be really quite scary and unpredictable. This is obviously not good as many people tell me, but until you've lived it I truly believe you wouldn't understand how challenging it is. It cant always be helped when you feel so poorly to the point of being physically and mentally exhausted from doing barely anything. On the days I do try something, I feel so much pain and extremely miserable in return, that it doesn't seem worth it. This has a knock on effect of me realising how limited life has become.
Weakness - My body in return of EDS has become extremely weak and fragile. Pain sometime feels like a domino effect, once one thing starts hurting its usually an avalanche of pain about to commence. Therefore, this leaves me feeling like I've been run over by a bus and ready to drop. The slightest knock or movement can make me bruise, sublux or dislocate. I have muscle weakness also and feel extremely trembly from my loose joints and POTS symptoms. A symptom than can sometimes be confused as anxiety as I was recently informed! Some days I cant stand and some days my body feels like a wooden puppet. Having to use my wheelchair on days I know I wouldn't be able to manage a short distance of walking really gets to me. I often decline the offer on a quick trip out then pay for it a hundred times over after! Even at points when I have tried to strengthen my body it feels even weaker.
Makes you isolated - This is both a physical and mental trait of an illness. I cant stress enough how isolated pain can make you. Often I have no choice other than to lie down in my room with the pain I experience. This in theory, isolates me and I am left in my room not able to be around people because of how intense it feels. All I want to do sometimes is escape any, noise, loudness or people because I feel so stressed with pain and not being able to control it. Noise sensitivity has been an increasing problem as things get gradually worse. I often take myself away and just want to be left alone to try and cope or get through a bad hour. This obviously has a huge effect of relationships with family and friends because you become confined to your home or bed and unable to manage anything you want to. You tend to get left out of being invited places or feel like a bit of a burden on others when you do. Nothing seems simple or easy whilst in pain. It is also isolating in a sense of how different it can make you feel to everyone around you, but I will re visit this in my next post!
Tired -The draining feeling of fatigue is a feeling you just can't get used too. It often just creeps up on you and within five minutes I can go from feeling drained to feeling like my head is buzzing with adrenaline. I find it extremely difficult to relax no matter how tired my body feels, especially through the night when pain is so active and will not let you fall asleep. I often feel like my energy is evaporating out of my skin from just being awake some days. I even find focusing on simple things like reading a book or watching TV extremely challenging and draining because my concentration has become extremely poor. Completing the smallest task can leave me feeling like I've had a really busy day and this is often plagued with frustration when I know I really haven't done anything remotely active.
It is a delicate subject so I want to try and give a really detailed post as I know people suffer from illness feeling alone, worried and afraid.