I was diagnosed with Fibromyalgia back in 2010 after having a barrage of tests. As you all know there is not one test that says you do have it, they have to exclude other conditions first. Like most of you I googled it and found some good support and information websites this being one of them. All of the symptoms that were listed on the page in front of me I mentally ticked off, 'Yes I have that', and 'I suffer from that' every single one was ticked off so after all of the testing they can do they finally diagnosed Fibro. Since 2010 you may or may not be surprised to find that I have also been diagnosed with the following illnesses:
1. M.E. (Chronic Fatigue Syndrome)
2. Type 2 Diabetes
3. Rheumatoid Arthritis
5. A nerve condition that affects my whole body
I also suffer from Scoliosis but was diagnosed with that back in 1997 when I was 16. A lot of people say that these conditions go hand in hand with Fibro but no one of us is exactly the same (I don't think) anyway. The first thing was the M.E. if you don't suffer from this condition then I count you as very lucky. Have you ever been so tired that you've been in tears because you literally cannot move even one step because of the massive fatigue you face? We all get tired, but this is like tiredness you've never felt before. I feel it like someone is putting bricks on my shoulders and they keep adding more and more and more until finally my shoulders buckle and I'm down. That is me everyday fighting the tiredness. Some days I win the battle some days I don't. I try very hard not to give in to my illnesses. I fight with every breath I take. I get up in the morning and have my meds (8 just before breakfast), I have breakfast and get dressed. I may go out in the wheelchair for a bit of shopping or stay in and watch dvd's but the point is I do it to not let all of my illnesses beat me. I could very easily have days where I stay in bed but I don't want to. Don't get me wrong when I have to I do. There are days when I can't even lift up my duvet to get out of the bed (well it's a riser and recliner - more on that later). I can't lift my head up off the pillow and I sleep all day. I don't eat because the tiredness, the fatigue has won and I'm bad all day. I have found that when I am extremely tired that I can't even put words together to form sentences. I'm not even properly awake so if someone talks to me I'm not actually properly aware that they are talking to me. Sometimes random words just come out of my mouth. There is a point in time with this fatigue that is very problematic. It's the half asleep state, either coming out of a bad fatigue sleep or going into it. It's best not to talk to me or say anything important or ask me things because I have no recollection of it later on when I properly wake up. Just last week my 17 year old son asked if he could use the Xbox and apparently I said yes. I asked him, 'when did you ask me that question' his reply was, 'when you were half asleep!' So we had to have the same conversation that we've had many before which is don't ask Mum questions when she's half asleep. M.E. isn't the same as MS. MS sufferers get better and have relapses. M.E. robs you of your mobility and your memories. Since having Fibromyalgia I have suffered with short term memory loss but you get memory loss with M.E. M.E. is debilitating in the fact that it leaves you so tired your whole body aches with tiredness. If you can't lift your head off the pillow then your not going anywhere. You can even feel okay some days, so you get up, get dressed, have breakfast and go shopping and then in the afternoon be so tired that you just can't move. There are times I can get in the car but then I can't get out. My whole body is so tired that the rub. Everywhere is tired. Fibro is chronic pain. I sort of have it hand in hand with the Fibro. My body has been tested to the limit over these 10 years. I dreaded going through the whole pip thing. On DLA I was on indefinite and was one of the last to go through the whole changing over. Thankfully we had help from the CAB and we got the PIP full whack and don't have to get it again for another 10 years. The whole thing is truly awful and many people have had to go through appeals and that's a difficult process. I remember having to appeal my first DLA claim and that was scary. The rheumatoid arthritis is in my knees and elbows and wrists. The arthritis is in the bottom of my spine. About 3-4 years ago I found that I can't lie down flat in a bed mainly because of the scoliosis but more so due to the arthritis in the bottom of my spine. I had help from occupational therapy and together we tried all sorts to get me to be able to get back in bed upstairs. I had been sleeping in my armchair with my legs resting on the couch. Eventually we ran out of options. I told someone at church about it and they mentioned a riser/recliner so I got in touch with OT and we went to a mobility aid provider so I could try one out. It risers so I can get out of it easily to move to the loo and shuffle to the kitchen or whatnot. The other thing is it reclines back so far that it gives you the sensation of lying back but your not straight, your sort of lying in a V shape and it's been a blessing. I have to sleep downstairs because the bedroom upstairs isn't big enough for the bed and my chair. Arthritis is horrible, absolutely awful. The nerve pain we don't have a name for. All I can tell you is that it's like when you have pins and needles but it's painful and extremely sore. It gets all over my body (Yes even there) and I can't do anything except take Paracetamol on top of all my meds.
I was very shocked when my GP told me I had type 2 diabetes. I remember it like it was yesterday. I went to get the results of a simple blood test and he quite bluntly you have type 2 diabetes. I will say it was a huge shock. I honestly thought to myself, 'what else?' 'Isn't Fibro and M.E. enough?' Isn't living with rheumatoid arthritis and normal arthritis enough?' Now my life needs to change again. So now I have to deal with not one condition but at least 5-6. Life isn't easy for you and me and we have to deal with a lot. Our illnesses are invisible most of the time. Unfortunately because of the illnesses I have you can see a physical change in me. I've put on weight I take 8 tablets in the morning, 4 at tea time and 5 before bed. Is it all too much? It certainly is, but somehow we deal with it, somehow we face each day ready to fight, and we have to be ready to fight. Fight for your rights, fight for your benefits, fight for your loved ones to show you support and help when you need it. Fight your illnesses, as much as you can. I understand that we are all in terrible pain and face a lifetime on medication and potentially picking up more illnesses but its what we do with ourselves that we have to fight for. I fight for you and for me and for more people to understand our illnesses and how they make us feel. With this post my aim is to let you all know that I'm suffering too, just like you and I know and understand your feelings. If you wish to contact me or comment then please do so. I hope my post has helped you, to know that your not alone and someone is suffering with the same thing as you, we are fighters, and we fight together!